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Queda un mes para el Día Mundial de HP
4/16/2014

“La declaración de un Día Mundial de esta enfermedad, supone un paso hacia adelante en la creación de una conciencia universal en torno a la importancia de encontrar una mejora en la calidad y la esperanza de vida de más de 25 millones de personas que la padecen en el mundo.” – Asociación Nacional de Hipertensión Pulmonar (España)


…Y que va a hacer tu organización? Cuéntanos a International@PHAssociation.org

La Importancia del Ejercicio e Hipertensión Pulmonar
3/27/2014

El ejercicio a veces puede aumentar la distancia al caminar en pacientes con hipertensión pulmonar. Habla con tu médico sobre las actividades físicas adecuadas para ti. Aprende más por el sitio web de PHA. La Conferencia 2014 de PHA también incluirá una sesión dirigida por expertos médicos sobre la nutrición y el ejercicio. ¡Nos vemos allá!

Raise Awareness this World PH Day
3/26/2014

Sharing your story with PH in the media can be a great way to educate others about this disease. What better time to do so than World PH Day this May 5? For tips on creating your pitch and sharing information with reporters, visit the World PH Day website.

 

Tom Lantos Grant Available Internationally
3/9/2014

Did you know that the Tom Lantos Grant is available to people involved in PH anywhere in the world? Check out these projects from 2012 from India to South Korea, and apply today! Deadline is April 15.

Riociguat Approved in Japan
1/24/2014

(MarketWatch) Bayer recently received approval for their pulmonary hypertension drug riociguat (Adempas) in Japan. Read article

PH Awareness Month in China
12/18/2013


On 30 Nov., the last day of PH Awareness Month, we launched a public campaign called “Blue Fun Run” in Guangzhou, the largest city in southern China. About 100 people, either wearing masks or sandbags, joined in the running competition and more than 200 people involved in this activity. Some of the PH patients took part by racing in wheelchairs with the help of their families or volunteers. After the competition, all participants were invited to a conference hall to watch our promotional videos and share their feelings about PH. The racing route was only 3.6 km, but it crossed landmarks and scenic spots of Guangzhou, and was crowded with travelers and visitors all over the world. Newspapers and popular TV stations in Guangzhou covered the story.

iSEEK China Awareness Month 2013 Guangzhou
PH patients take a group photo before racing
iSEEK China Awareness Month 2013 Guangzhou
Patients, competitors, and volunteers at the starting line

iSEEK China Awareness Month 2013 Guangzhou

iSEEK China Awareness Month 2013 Guangzhou

“I used to think I was a healthy person and I chose to wear sandbag to run, but a few meters later, I began to feel breathlessness and tired. Now, I know how the patients feel every day,” one competitor told to the media. 

iSEEK China Awareness Month 2013 Guangzhou

“When I was running, people asked me why I was wearing blue lips; I told them it is for pulmonary hypertension. It was so cool and fun!” a young girl told reporters.“Even if there are target therapies in China, many patients are unable to afford it and if they go without treatment, most people die within 2.8 years.” One patient shared her sad story of fighting with PH.

Besides this public awareness campaign in Nov., we also held two meetings for our patients’ education program, one in Xi’an, and the other in Guangzhou; 3 medical professionals and 70 patients and families attended.

iSEEK China Awareness month 2013 Patient Education Day

Written by Huanghuan,
President, iSEEK PH Center

BLUE LIP KISSES: Pulmonary Hypertension Awareness Month in Singapore
12/18/2013

PH Singapore at NHC

S.M. Amin, leader of the PH Singapore Support Group, center; Dr. Tan
Ju Le, PH Physician at National Heart Centre is to his left.

November 2013 marked the 1st PULMONARY HYPERTENSION AWARENESS MONTH CAMPAIGN in and for the patients of Singapore. The Blue Lips Kisses were organized by the PH Singapore Support Group with the kind assistance of the pharmaceutical companies and hospitals.

The event was held in 5 different hospitals to cater for the different patient populations. Staff of Industry, hospitals and patients rendered support to mind the booth to make it a successful event.  

PH Singapore Blue Lips
Volunteer participants in the Blue Lip Challenge

The main event was held in NUH as they were also celebrating the 10th Anniversary for the Structural Heart Disease Clinic in conjunction with the Awareness Month Campaign. Goodie bags were given away with the background of DJ music and balloons. Patients made their way to the hospital to show support and engage in volunteer work. 

At other hospitals a note pad and pen were given away for any Blue Lip contribution.  A total of 1111 Blue Lip kisses were collected from all 5 hospitals. Hooray! This was great compared to what we did in 2011, which was only 875 Blue Lips. 

So now we can proudly say that 1111 people know and have heard of PULMONARY HYPERTENSION.A big thank you to all who have worked hard and coordinated with me and the Industry to make this a heart-warming and successful event.

CONGRATS!!! 

By S.M. Amin
Leader, Singapore PH Support Group

PH Singapore at NUH HC
Dr. Yip, center, PH physician at the NUH Heart Centre
New Mitochondrial Research Promising for PH
12/17/2013

(Medical Xpress) Queen's University [in Canada] professor Stephen Archer's research has revealed that in serious human diseases (such as pulmonary hypertension, lung cancer, cardiac arrest and neurologic disease) the cell's power source, known as mitochondria, displays an abnormal structure.

Dr. Archer discussed his findings in a recent New England Journal of Medicine article.

"This explosion in the understanding of the once secret lives of mitochondria will almost certainly advance our understanding of an important mechanism for cell death and cell growth," says Dr. Archer. "This basic understanding offers new molecular targets for therapies of neurologic diseases, cancer and pulmonary hypertension." Read the full article

PHA Canada’s Conference Video Released
10/26/2013

Missed PHA Canada’s 2013 National Conference in Ottawa? You can pretend you are there by watching the Conference video. Watch the video on YouTube

International Highlights: What's Going on Around the World?
10/18/2013

In Belgium...PH Belgium hosted its 12th anniversary celebration Oct. 12 and 13. The event focused on topics from understanding the most recent scientific thought around PH to living with PH.

In Bulgaria...Todor Mangarov of PHA Bulgaria bikes from Sofia,Bulgaria, to University Hospital in Vienna, Austria, to raise awareness of and access to pulmonary thromboendarterectomy (PTE) surgery for Bulgarian chronic thromboembolic pulmonary hypertension (CTEPH) patients. At the end of Todor's 1200 km journey, he met with Dr. Walter Klepetko, who was Todor's own doctor during his successful CTEPH treatments.
meanwhile...The Bulgarian society of Patients with PH (BSPPH) is hosting an Awareness Month event: a "Faculty of Support" to provide patients and family members with training and support. BSPPH also published its website in August, www.bspph.net

In Canada...The 3rd National PH Conference was held Sept. 20-22 in Ottawa.

In Chile...HAPCHI, the new Chilean association, is working with the Sociedad Latina de Hipertensión Pulmonar to hold the Día Latino de Hipertensión PUlmonar (Latin PH Day) event in Santiago, Chile, Nov. 22-23, 2013. 

In China and Colombia...Two new patient news bulletins have been created to spread information and hope to PH patients across the two countries. In China, the publication is Blue Lips ( 蓝嘴唇 ); the Colombian publication is called Pulmonary Hypertension Colombia (Hipertensión Pulmonar Colombia). 

In Europe... Ironman competitions in Austria, France, Germany, Norway, Spain and Switzerland included athletes running on behalf of PHA Europe and local PH associations; banners and activities advertising PH along the Ironman courses; and booths about pulmonary hypertension. PHA Europe also got some press time and had the opportunity to network with a few royals who showed their support for the PH community (Princess Alexia of Greece and Denmark and Prince Al Khalifa of Bahrain). Lastly, athlete Mark Martinez raced for PH in SPain and won his age category, which means he wore the PHA Europe and Asociación Nacional de HP (Spanish PH Association) logos for audiences at the finals in Hawai'i Oct. 12. 
meanwhile... PHA Europe had its general annual meeting in Barcelona in early September, when the group also celebrated its 10th anniversary as an association. Congratulations to PHA Europe!

In France...HTAPFrance hosted the Second Patients' Congress in French in Lyon, France, Oct. 5-6. The Congress was for PH patients and their families to learn about PH and how to manage it, as well as to share how patients and families deal with different PH-related problems in their daily lives.

In Japan...PHA Japan is hosting several exciting events this fall: the Annual Congress of teh Japanese PH Society Oct. 14 in Tokyo, which used the theme "Sometimes it's PH," the 7th National PH Conference Oct. 20 in Osaka and a Six-Minute Run for PH Awareness in November in Kyushu.

In Singapore...The Singapore Support Group will use the "Blue Lips" campaign to spread knowledge of PH across Singpaore this Awareness Month.

Epoprosenol for Injection Now Available in Canada
10/1/2013

This month, CARIPUL® (epoprostenol) for Injection became available in Canada by Actelion Pharmaceuticals Canada Inc. for the treatment of idiopathic pulmonary arterial hypertension (IPAH) and pulmonary hypertension secondary to scleroderma spectrum of diseases in NYHA functional Class III and IV patients who have not responded adequately to conventional therapy. Read article

Unexplained Breathlessness Not Okay Say Australian Doctors
9/3/2013

Sometimes its PH Doctors from the Pulmonary Hypertension Society in Australia spread awareness about pulmonary hypertension and the importance of early diagnosis by stressing that unexplained breathlessness can be something very serious.

Read article | Read about pulmonary hypertension symptoms | Get involved in our early diagnosis campaign

Canadian PH Teen & One Direction Super Fan Gets New Lungs, But Misses Concert
8/31/2013

Thirteen-year-old Amanda Kakoz is the proud owner of a new set of lungs after undergoing a double-lung transplant in July. Unfortunately, her hospitalization coincided with the One Direction concert she had been waiting two years for. Amanda had more luck with getting her lungs and only had to wait a month. The Trillium Gift of Life Network (TGLN) in Canada reports that 23 percent of Canadians are registered as donors, well below the registration rate of 45 percent in the U.S.

We can do better in both countries. Spread the word and be sure you are an organ donor.

Read more about Amanda's story | Canadians: become an organ donor | Americans: become an organ donor | Read about pulmonary hypertension and transplantation

Building Bridges in Saudi Arabia: PHA Staff Travel to International Meeting and Strengthens Global Ties
8/16/2013

Late in April, PHA President Rino Aldrighetti and Julia Friederich, PHA’s International Associate, boarded a plane to Jeddah, Saudi Arabia, for the Saudi Association of Pulmonary Hypertension’s 6th Annual PH Meeting and the 3rd Pulmonary Hypertension in the Young Assembly. Doctors and researchers came from all over the Gulf Region, as well as from Brazil, Germany, Spain, Sudan, Switzerland and the U.K. An important reason for PHA's attendance at the meeting was a leadership discussion on how PHA could assist the Saudi Association for Pulmonary Hypertension (SAPH) in the development of a patient structure.

The two days of SAPH meetings highlighted problems treating PH in different Middle Eastern countries. An emerging theme throughout the discussions was the need for better medical training and coordination in remote areas and improved patient support and education.

The meetings covered a wide scope of problems and updates from the clinical, academic, and scientific research perspectives. Most of the presentations also managed to approach treatment from a well-integrated clinical and social approach. Many doctors pointed out that it was important to remember to treat the patient, not the catheterization numbers. A presentation on medical ethics included the perspective of Islamic ethics, which promote the pursuit of knowledge and scientific progress, “do no harm,” and the concept of putting what is best for your patients first and foremost beyond all other norms and rules.

The pediatric assembly began with a moment of silence in memory of the late Robyn Barst, MD, who helped develop the Saudi Guidelines for the Diagnosis and Treatment of PH. As it has throughout the world, PHA plans to continue Dr. Barst’s legacy of cooperation between our two countriesas we move forward with translations of patient materials and as we continue to share ideas for both medical and patient support and education.

To this end, PHA recently signed a Memorandum of Understanding (MOU) with SAPH. An MOU is an agreement between PHA and a partner PH organization in which both organizations commit to share information and best practices to accelerate the growth of the PH movement.

“It was a wonderful experience,” Rino says, reflecting on the meetings and sharing of ideas. “We thank our hosts at SAPH and look forward to rapidly evolving this partnership.”

To learn more about SAPH, visit its website at saph.med.sa.

Mariposa News (PDF)
8/16/2013

Read the Summer 2013 issue of Mariposa News - PHA Europe’s Official Journal

Canadian Doctor's Rare Diagnosis Raised Awareness of PH
6/6/2013

(The Record) - The Record in Canada recently reported about Dr. James Gowing, who has treated cancer and blood diseases at Cambridge Memorial Hospital for the past four decades. They shared a story from earlier in his career about a difficult case of diagnosing and treating a pulmonary hypertension patient before there were many medications available. The case at the time was highly publicized. The realities he faced trying to treat his patient back then demonstrate how far we've come in the advancement of treatment for PH. Read article

Mariposa News (PDF)
2/3/2013

Read the winter 2012 issue of Mariposa News - PHA Europe’s Official Journal

International Highlights: What’s Going on Around the World?
11/14/2012

With more than 60 PH associations worldwide, there is always something PHenomenal happening in the global PH community. These international highlights are a testament to the hard work of PH community members everywhere!

  • In Argentina…HIPUA (Hipertensión Pulmonar Argentina) hosted two PH Days for Patients and Family Members in October. The meetings, held in Buenos Aires and La Plata, provided information on PH, treatments and resources available in Argentina.
  • In Bulgaria…PHA Bulgaria held their First National Conference on PH October 13-14. The meeting, partially funded by a Lantos Grant, brought together patients, families and health professionals across Bulgaria to discuss patient rights, treatment and disability prevention, and the development of support groups.
  • In Canada…PHA Canada is celebrating Awareness Month with a campaign of "6 Minute Walks for Breath." Routes of six minutes are set up, punctuated with information on PH symptoms along the way. Participants can walk the routes as many times as they want to raise money for PH. The walks are being held in Vancouver, Ottawa, and Edmonton, and Toronto.
  • In China…iSEEK Cultural Center in Beijing hosted an event in Shenyang in September to share information with patients about changes in the national health insurance system.  They also held their Inaugural Conference for iSEEK's Medical Council in November, with 15 doctors from more than six Beijing hospitals signing on as medical consultants, and will continue holding public education events for Awareness Month.
  • In Europe…PHA Europe held their General Annual Meeting in Castelldefels, Spain Sept. 12-16. Leaders of 39 PH patient groups from 20 different countries attended.
  • In France…HTAP France held a Children and Families' Weekend (WEEF) in Cantal Oct. 28-29. Parents and pediatric patients gathered to share experiences and get the latest medical information on pediatric PH. 
  • In Korea…PHA Korea held their First International Conference and Scientific Sessions Oct. 13 in Seoul. More than 200 people attended, including patients, caregivers, health professionals and industry representatives.
  • In South Africa…PHSA (PH South Africa) hosted a PH Awareness Seminar in Johannesburg November 3. The Seminar featured many guest speakers (including several doctors) and focused on PH and PH management in South Africa.

 

International Leaders' Summit 2012: "A Leap of Empowerment"
11/9/2012

Attendees at PHA's Second International Leaders' SummitOn June 22–24, 2012, nearly 1,500 patients, caregivers and medical professionals came together in Orlando, Fla., for the largest PH gathering in the world — PHA’s 10th International PH Conference and Scientific Sessions. For three days, attendees had the opportunity to learn from, encourage and inspire one another as they continue the fight against PH.

This Conference truly lived up to its theme: The Power of One: From a Kitchen Table to Around the World. It was not only the most highly attended in PHA’s history, but it was also the most global. Attendees came from across the world to interact with other patients, caregivers and medical professionals and to find information about the advances in PH that could make a difference in their communities back home. Attendees came from Argentina, Australia, Brazil, Bulgaria, Canada, China, Colombia, France, Germany, Greece, Israel, Japan, Mexico, Nepal, New Zealand, Nigeria, Norway, Pakistan, Portugal, Saudi Arabia, Slovakia, South Africa, Spain, Switzerland, Taiwan, Turkey, United Kingdom, U.S.A. and Venezuela — 29 nations in all from six continents.

International Leaders' Summit and Activities

The International PH Conference and Scientific Sessions draws in an increasing number of participants from around the world each time the event is held, and PHA is pleased to offer programming specifically for global attendees. In 2010, PHA hosted the First International Leaders’ Summit for PH association leaders from the 60 national PH associations all over the world. The 10th International PH Conference featured the Second International Leaders’ Summit as well as many new programs for global patients, PH organization leaders and medical professionals.

An International Perspective

Juan Fuertes, a PHA Europe Board member and Coordinator at the Asociación Nacional de Hipertensión Pulmonar in Spain, wrote to PHA about his Summit experience: “It was my first time [attending] the International PH Conference, and I was speechless when I saw the sheer size of the event. My presence in Orlando was to represent PHA Europe and the Asociación Nacional de Hipertensión Pulmonar. It was a priority for both organizations to be present and show our support for the activities that had been so very carefully organized. In a world where distances are shorter thanks to the Internet, one would tend to believe that personal contact is not that important anymore. But nothing could be further from the truth.

“When we are in our homes, we fail to see the magnitude of the disease. We fight and we work very hard because we know that what we are doing is going to change the fate of many people, but when we come together and see 1,500 people united in the fight against PH, the feeling is overwhelming. Patients, so strong and courageous, moving around to learn more about the disease, giving and receiving support; physicians sharing their knowledge with each other and with the people they care for in their daily practice; the number of meetings, sessions, experience sharing … that is a sight to behold!

“One of the elements of the Conference was the Second Leaders’ Summit. More than 20 countries were there, and speakers introduced subjects that were important for us all. This was a very positive experience. However, the surprise came when we met for the International Strategy Meeting. Listening to what other patients’ organizations have to say about their experience and having the chance to meet those who work to make a safer world for PH patients by improving their life expectancy and quality of life is something that cannot be replaced by email messages or Skype calls.

Vivienne and Christopher McGrath at PHA's Second International Leaders' Summit“The turning point was that this experience sharing became policy making in the blink of an eye. Talking about the World Pulmonary Hypertension Day and the efforts we make to keep up with an ever-increasing number of awareness campaigns turned this international gathering into a forum that started to shape the future of PH in a very direct and profound way. We have individual goals that are particular to our countries … but there are elements that are common to all of us, and we have to put our minds in the same wavelength to create a momentum that will benefit all organizations without distinction.

“What we witnessed there and the result of that meeting was a gigantic step for us all because the power of all organizations in specific lines of action and policies is the leap of empowerment the global PH community needs.”

The Power of One

The International Leaders’ Summit brought together leaders from around the globe and truly embodied the theme of The Power of One. As Nicolene Müller, committee member of PHA South Africa, explains, “It was amazing seeing all the people during dinners, thinking that it all started with four women in Florida and seeing how it has grown. It was also fantastic feeling part of something bigger than yourself, something that could change the future toward a cure for PH. My wish is that every PH patient, caregiver, doctor and everyone involved with PH in a big or small way will experience that love that we have felt.”

PHA looks forward to continuing the discussion at the 11th International PH Conference and Scientific Sessions in Indianapolis, Ind., on June 20–22, 2014.

Puppy Love for Natalie
10/22/2012

(Chorley Guardian) - Man’s best friend is helping a mum recover from a double lung transplant and life-threatening pneumonia. Natalie Kerr, 30, from Adlington, was diagnosed with pulmonary hypertension back in 2008 which meant that she was taking oxygen daily. Doctors claimed that she only had three years to live but luckily in February a matching donor was found.  Now after two months of regular hospital visits she has been ordered home by doctors to relax – with a new puppy! Read article

New Treatment Target Brings Hope for Scleroderma Patients
10/11/2012

(News-Medical.Net) - Research presented at the European Academy of Dermatology and Venereology in Prague, Czech Republic, suggests that inhibition of the SMAD protein may be a viable therapeutic target in scleroderma patients. Read article

iSeek Raises PH Awareness in China
9/25/2012

On March 4 the iSeek PH Cultural Center, a Chinese non-governmental PH organization, held an awareness activity named "Seeking Blue Lips and Focusing on Pulmonary Hypertension." This was one of the first times that a Chinese NGO spread PH awareness to the general public. More than 1,000 people witnessed the activities at the iSeek booth, which spurred strong responses from websites, TV, newspapers, and the like. Read more

Communities Across the Globe Celebrate World PH Day
9/25/2012

The Asociación Nacional de Hipertensión Pulmonar (ANHP) created World Pulmonary Hypertension Day, May 5, to raise awareness of PH on a global scale. The event consisted of a Scientific Symposium on May 4 for PH physicians, followed by the main World PH Day events, a cocktail gala and the ANHP General Assembly in Madrid, Spain, on May 5. Read more

Former Miss Puerto Rico is Terminally Ill
9/24/2012

(Fox News Latino) - Miss Puerto Rico 1985, Iris Matias, is suffering from terminal pulmonary hypertension which has her bedridden and dependent on a machine connected to her heart that provides the necessary medications to keep her alive. Read article

What’s Going on Around the World?
9/2/2012

With more than 55 PH associations worldwide, there have been some exciting developments in the global PH community. These international highlights are a testament to the hard work on the part of PH community members everywhere!

  • In Argentina… Each month, HIPUA (Hipertensión Pulmonar Argentina) hosts meetings for patients and caregivers called “Learning to Live with PH.” They consist of an education program led by hematologists, nutritionists, emergency medical technicians, doctors and alternative therapy practitioners. The program also brings in psychologists to help PH patients deal with the emotional toll of living with the illness.
     
  • In Europe and the U.S.... The National Organization of Rare Disorders (NORD) in the U.S. has teamed up with the European Organization for Rare Diseases (EURORDIS) to create communities for rare-disease patients around the world. The goal is to help patients who speak different languages connect with one another. For more information, visit RareConnect.org.
     
  • In Indonesia… The first Indonesian PH Support Group was held in March 2012. Six patients attended from Jakarta, including a pediatric PH patient. The “Indonesian PH Family” has connected with 15 PH patients in that country.
     
  • In Israel… The second annual Yarid Shira, in memory of PH patient Shira Dinur, was held on May 28, 2012. The evening consisted of music, entertainment, a raffle and buffet. All proceeds went to the Israeli Pulmonary Hypertension Association.
Ringwood Teenager Meets his F1 Heroes
7/30/2012

(Salisbury Journal) - A teenager with Idiopathic Pulmonary Arterial Hypertension met his Formula 1 heroes at the British Grand Prix. Samuel Cheetham met almost all the drivers, including Lewis Hamilton and Jenson Button, and had a tour of the pit lane. Read article

I’ve Had a Double Lung Transplant Already... And I’m Only 30
7/12/2012

(The Sun) - Young mum Natalie Kerr was so ill she planned her own funeral and sorted out a will so her children would be taken care of. That was just a few months ago when Natalie was confined to bed by a rare condition called pulmonary hypertension that left her struggling for air and fighting for life. Today, Natalie is playing football with son Brandon and walking her daughter Isabelle to school  —  things that would have been impossible before she had a life-saving double lung transplant. Read article

What’s Going on Around the World?
7/2/2012

With more than 55 PH associations worldwide, there have been some exciting developments in the global PH community. These international highlights are a testament to the hard work on the part of PH community members everywhere!

In Canada The British Columbia PH Society (BCPHS) held its 11th Annual PH Symposium on February 17-18, 2012, in Vancouver, Canada. The event started with a Meet and Greet for PH patients on Friday evening followed by the PH Symposium on Saturday.

In Europe… PHA Europe published and distributed the winter 2012 edition of its quarterly newsletter, MariposaNews. To learn about the work of PH associations in Europe and read past issues of MariposaNews, visit www.PHAEurope.org.

In Israel...  is working to create a teleconference for PH associations around the world. The goal is to discuss issues important to the global PH community and work together to advance the field. The event will be held in conjunction with World PH Day (read the "In Spain..." item for more information).

In Latin America... Migdalia Denis, leader of the Sociedad Latina de Hipertensión Pulmonar (SLHP), had the opportunity to be interviewed on CNN’s Notimujer, a program broadcast in Spanish. She talked about her PH experience and PH awareness. View her video

In Spain… The Associación Nacional de Hipertensión Pulmonar (ANHP) is creating and organizing the first worldwide day of PH awareness on May 5, 2012. World PH Day will involve PH associations and partner organizations from all over the world in an effort to promote awareness of PH. The main event will be held in Madrid, Spain.

Daughter Collects Pennies for Mom
6/18/2012

(YorkRegion) - Find a penny, pick it up. All day you’ll have good luck. McKynlea Waters-Goodman, 10, hopes some of that good luck will rub off on her mother, Cindy Winters. Ms Winters suffers from pulmonary hypertension. Read article

Mylan Canada Receives Health Canada Approval for Generic Version of Tracleer®
6/7/2012

(Canada Newswire) - Mylan Inc. today announced that its Canadian subsidiary, Mylan Pharmaceuticals ULC, has received approval from Health Canada for Mylan-Bosentan Tablets, 62.5 mg and 125 mg. Mylan-Bosentan is the generic version of Actelion Pharmaceuticals Ltd.'s Tracleer®, used for the treatment of pulmonary arterial hypertension. "Providing Canadians access to high quality, affordable medicines is our primary goal," said Dick Guest, Mylan Canada's President and CEO. "By providing access to more affordable generic drugs, Mylan helps to reduce the burden on our health care system, benefiting all Canadians." Read article

Scleroderma Malignancy Risk Linked to Antinuclear Antibodies
5/29/2012

5/16/2012 (Internal Medicine News) - The presence of specific autoantibodies may help to predict which patients with systemic sclerosis are likely to develop cancer within a few years of their diagnosis, according to the findings of a U.K.-based registry study. Read article

The Trajectory to Diagnosis With Pulmonary Arterial Hypertension: A Qualitative Study
5/25/2012

(BMJ Open) - Funded by Pulmonary Hypertension Association UK, objectives of this study were to investigate the patient's experience of the trajectory to receiving a diagnosis of pulmonary arterial hypertension (PAH) and inform the provision of care for this patient group. Participants were interviewed in their own homes across England.

Conclusions: Limited awareness of PAH outside specialist centres leads to misdiagnosis, delays in treatment and an increasing sense of anger, frustration and confusion for many patients. Repeated tests and visits to numerous medical professionals, including GPs and cardiac or respiratory consultants over a number of years, represents a significant use of resources and consequent cost to the NHS. Read Article

New Lease of Life for Battling Mum
5/10/2012

(Chorley Guardian - UK) - A battling mum who underwent a double-lung transplant has beaten the odds to make a remarkable recovery - just a month after leaving hospital. Natalie Kerr, from Adlington near Chorley, faced not seeing her children grow up after being diagnosed with pulmonary hypertension four years ago. Read article

Participate in World Pulmonary Hypertension Day on Saturday, May 5
5/4/2012

The Asociación Nacional de Hipertensión Pulmonar of Spain (ANHP) has created World Pulmonary Hypertension Day to raise awareness of pulmonary hypertension on a global scale. This event will consist of a Scientific Symposium on May 4, 2012, for PH physicians followed by the main World PH Day events, a cocktail gala and the ANHP General Assembly on May 5. Visit their event page for more information

Please show your support and solidarity for this event by participating in online awareness activities. PHA is asking our community members to change their Facebook statuses on May 5 to signify our unity in recognizing this important day. Keep an eye on PHA’s Facebook page for further instructions!

¿Has Visto El Nuevo CuidadoDeSalud.Gov?
5/4/2012

Este sitio de web provee información para entender la ley de cuidados de salud, recursos para explorar tus opciones de cobertura, un glosario, consejos para mantener la salud y más. Visita el sitio

VentriPoint Launches Clinical Trial in Pulmonary Arterial Hypertension (PAH) With Top PH Centres in the United States and Canada
5/4/2012

(SYS-CON Media) - VentriPoint Diagnostics today announced the commencement of the pivotal clinical trial to demonstrate that the VentriPoint heart analysis system is equivalent to cardiac MRI in patients with pulmonary arterial hypertension (PAH). The trial will be lead by Dr. Robyn Barst. Read article

First World Pulmonary Hypertension Day May 5
4/30/2012

From our president, Rino Aldrighetti's blog...

In 2010, Juan Fuertes and Irene Delgado of the Asociación Nacional de Hipertensión Pulmonar (ANHP) began a quest.

They believed that it was time for the world to recognize pulmonary hypertension – and they believed that a World PH Day was the way to do it. Like any new idea, at first there was skepticism but they continued to push forward…and soon people began to understand the possibilities.

They picked a day that has great significance to the Spanish PH community and will soon become a marker for our community worldwide. May 5 is the date of the first recorded pediatric PH death in Spain. That was 30 years ago. Now that date will become a marker for greater global cooperation in the fight against this disease.

Read more about World PH Day and how you can get involved

Okanagan Scientists Lead Trek to Investigate High-Altitude Maladies
4/19/2012

(Castanet) - Canada’s international scientific expedition to Mount Everest is preparing to depart for Nepal on Sunday April 22. Everest 2012, a six-week, six-country research investigation into the effects of heart and brain blood flow and oxygen deprivation at high altitudes, will settle into the Pyramid Laboratory near Everest base camp for a six-week stay through the end of May. Expedition members will themselves be the test subjects for the experiments. Some experiments, like one measuring pulmonary arterial hypertension, involves invasive minor surgery to place arteriovenous shunts in wrist and neck arteries to measure acute hypoxia (oxygen deprivation) following ascent to high altitude. Read article | Follow the Everest expedition

CORRECTION - 'Breathtaking' Campaign Launched to Raise Awareness of Deadly Lung Disease, Pulmonary Hypertension, on Rare Disease Day
3/2/2012

2/29/2012 - (MarketWatch) -  In the news release, "'Breathtaking' Campaign Launched to Raise Awareness of Deadly Lung Disease, Pulmonary Hypertension, on Rare Disease Day" issued on 28 Feb 2012 23:01 GMT, by Pulmonary Hypertension Association Europe and Bayer HealthCare over PR Newswire, we are advised by a representative of the company that a new link fits into the following passage of text: "Footage of the 'Breathtaking' campaign events will be available at the following link at 17.30 CET on 29th February. http://bit.ly/z1Yn3R ". Complete, corrected release follows. Read article

'Breathtaking' Campaign Launched to Raise Awareness of Deadly Lung Disease, Pulmonary Hypertension, on Rare Disease Day
3/2/2012

2/28/2012 (MarketWatch) - A campaign has been launched today, on Rare Disease Day, to raise awareness of the little known but deadly disease, pulmonary hypertension (PH) and in particular, a rare form called pulmonary arterial hypertension (PAH). Events are taking place across Europe, with a key event in central Brussels to launch the 'Breathtaking' campaign and raise awareness of the disease which can lead to heart failure and ultimately death. Read article

Canada Comes Together: Uniting the PH Community from Coast to Coast
2/13/2012

PHA Canada conference attendees participate in an interactive PH and yoga workshop.The weekend of Sept. 16–18, 2011, marked the second National PHA Canada Pulmonary Hypertension Conference, where 250 patients, caregivers, family members and medical professionals from across Canada (as well as a few special guests from the U.S.) gathered in Toronto for an incredible weekend of learning, celebrating and sharing. The theme of this year’s conference was “Uniting the Community from Coast to Coast” and this spirit was truly present as attendees arrived from as far away as British Columbia and Prince Edward Island.

Conference weekend kicked off on Friday evening with a special “Meet & Greet” where attendees mingled while enjoying entertainment by special guest performer, Paul Adams. He sang “Let Me Breathe,” a song he composed as a tribute to those living with PH.

The rest of the weekend included a lineup of educational and support group breakout sessions on topics such as an interactive PH and Yoga workshop. The Saturday keynote dinner included the presentation of awards to outstanding members of the PH community followed by a presentation by the speaker, Mark Black, a heart and double-lung transplant recipient turned fourtime marathon runner, best-selling author, life coach and motivational speaker. Mark captured the hearts of all who heard him speak and received a standing ovation.

The weekend continued on Sunday morning with a very inspirational speech given by PHA Board member and Immediate Past-Chair of the PHA Board of Trustees, Carl Hicks. Carl motivated everyone to get involved in the fight against PH with his speech “The Power of One.”

A common thread throughout the weekend was the idea that no one does it alone; friends, family and the support network around us give us strength and make a huge positive impact on our lives. This could be seen in all the new friendships created throughout the weekend when people from all parts of the country met and shared their stories and words of support. It could be seen on the “Wall of Hope” where attendees left messages of hope for others as well as in the video interviews many attendees gave to our camera crew. These messages were used in PHA Canada’s “Lend a Hand for PH” awareness campaign.

PHA Canada’s new Board of Directors was elected during the weekend. While we were sad to say goodbye to a few Board members who decided not to run for reelection, we are excited to add some new faces to the Board. PHA Canada’s president since 2008, Darren Bell, decided to step down, and we are pleased to welcome our new president, Frank Poon.

Conference weekend was a huge success and we hope attendees met new friends, found strength in others fighting the same battle, and were inspired to take action to help fellow PHriends in their community. We look forward to hosting many more attendees at the 3rd National PH Conference in 2013!

By Jennifer Gendron, PHA Canada Regional Coordinator, and Angie Knott, PHA Canada National Manager

What’s Going on Around the World?
2/13/2012

With more than 55 PH associations worldwide, there have been some exciting developments in the global PH community. These highlights are a testament to the hard work of PH community members everywhere!

  • In Canada… PHA Canada has begun a nationwide “BLUES” campaign for PH awareness, which stands for Bluish hands, feet and lips; Lightheadedness; Unable to breathe; Edema; and Syncope. The campaign started in four cities in Canada and ended with a visit to Parliament Hill, Ontario. On Sept. 16-18, 2011, PHA Canada held the second National PHA Canada Pulmonary Hypertension Conference. 
       
  • In the Dominican Republic… The first PH patient support group was founded in the Dominican Republic with the help and support of the Universidad Católica Santo Domingo.  
     
  • In Europe… PHA Europe held its Annual General Meeting in Castelldefels, Spain, from Sept. 8–11, 2011. The meeting brought together 46 patient leaders and representatives from 22 countries. PHA Europe also launched its “Time Matters” campaign in an effort to increase global awareness of the disease and reduce the delay in PH diagnosis for many patients. Visit the website to learn more and share your story: www.phtimematters.org
     
  • In Latin America… The Sociedad Latina de Hipertensión Pulmonar (SLHP) celebrated the first “Latin Day of PH” on Nov. 28, 2011, which focused on PH awareness and education for the Spanishspeaking PH community.
     
  • In Panama…. The new PH patient association, la Fundación de Pacientes con Hipertensión Pulmonar de Panamá, recently held its first patient meeting.
     
  • In Uruguay… The Grupo de Apoyo para Pacientes con Hipertensión Pulmonar en Uruguay is the first PH patient support group to form in Uruguay. This group will bring much-needed support to patients in this country.  
     
  • In South Africa… In August 2011, PHA South Africa (PHSA) received an International Seed Grant award from PHA to promote awareness of PH and develop brochures and resources for PH patients in South Africa. PHSA used part of its award to host an educational event for medical professionals on Nov. 12, 2011.
Mariposa News (PDF)
1/24/2012

Read the winter issue of Mariposa News - The Newsletter of PHA Europe.

France OKs United Therapeutics IV treatment
1/11/2012

12/28/2011 (Gazette) - French regulatory agency Agence Francaise de Securite Sanitaire des Produits de Sante has approved IV use of Remodulin, which is already approved in most of Europe and in the U.S. for subcutaneous infusion treatment, or continuous injections just under the skin, according to United Therapeutics information. Read article

What’s Going on Around the World?
12/27/2011

With more than 50 PH associations worldwide, there have been some exciting developments in the global PH community. These international highlights are a testament to the hard work of PH community members everywhere!

  • In Canada… PHA Canada’s two-day PH conference occurred on Sept. 16-18, 2011, in Toronto. The conference brought together patients, caregivers and medical professionals from around the country under the theme of “Uniting the PH community coast to coast.” Topics varied from the basics of PH to coping with the disease.
     
  • In Germany... The German PH association, ph e.v., celebrates its 15th year in operation in 2011 and the Rene Baumgart-Stiftung Foundation, the PH research foundation operated by Phe.v., will celebrate its 10- year anniversary!
     
  • In Israel… The first-ever PH special event in Israel, a Yarid Shira carnival, was held in memory of PH patient Shira Dunur on July 1, 2011, with the proceeds going to PHA Israel.
     
  • In Italy… AIPI, one of the two PH associations in Italy, celebrated its 10th anniversary this year!
     
  • In Korea… PHA Korea has officially been granted nonprofit status. The group began with a PAH blog in 2006, and the organization is now working toward raising awareness of PH in the medical community, the general public and the Korean health department.
     
  • In New Zealand… The New Zealand PAH Trust association has become PHA’s newest MOU-holding partner! PHA’s Memorandum of Understanding program has united 26 associations in formal partnership to date.
     
  • In Norway… PHA Norway, through a Lantos Grant sponsorship, held its first meeting for patients and caregivers near Oslo on Sept. 24-25, 2011. Stay tuned for more information in the next Pathlight!
     
  • In Paraguay… A one-day PH conference for medical professionals was held on June 30, 2011, by the Asociación Latinoamericana del Tórax. Educational programming targeted cardiologists, clinicians and rheumatologists among other medical professionals.
Making a difference...
10/5/2011

The following is a copy of an entry from PHA President Rino Aldrighetti's blog: Empowered by hope - a PHA diary

NorwayMaking a difference...

In recent years, our friend Hall Skara has been building PHA Norway into an effective voice for pulmonary hypertension patients in his country. It's a great effort in a nation where there are not many diagnosed patients.

On September 25, PHA Norway held their national conference. the event generated good press coverage and and the 11:30 minute TV interview below. Many thanks Hall for subtitling the interview in English!

 

I really enjoy blogging about PHA Norway. They are a great example about how even a small community of patients, family members and medical professionals can make a difference.

Learn more about how PHA Norway got started and about the international PH community.

Sildenafil Appears safe and Effective for Eisenmenger Syndrome
9/27/2011

9/23/2011 (Heartzine) - In a study published by the journal Heart, researchers based in China led by Professor Zhi-Cheng Jing of Tongji University School of Medicine report that over a 12 month period, sildenafil treatment (oral administration) for those with Eisenmenger syndrome (a shunt-related congenital heart defect which leads to PH) was both well tolerated and appeared to improve key performance measures. Read article

PH patient in South Africa: "I'm being given a second chance at life"
9/6/2011

Everyone should meet Tina Beckbessinger. She is an absolute inspiration. At 30, when most women are looking forward to a full and healthy life, Tina has only a single mission - to remain strong enough to undergo a heart-lung transplant. Tina hopes by sharing her story to increase awareness surrounding organ donation in South Africa and in particular, the critical shortage of donors. Read Article

Evidence for the Role of Haptoglobin Phenotypes in Toxic Oil Syndrome
8/23/2011

8/15/11 (spectroscopyNOW.com) - It is now 30 years since toxic oil syndrome struck in Spain with devastating consequences. It is a food-borne disease that is estimated to have killed at least 2500 people with thousands more affected to this day with different degrees of disability. There was a swathe of acute symptoms which developed into chronic conditions such as motor neuropathy, musculoskeletal pain, sclerodermia, pulmonary hypertension, liver impairment, hypothyroidism and diabetes mellitus. Read article

Details of Updated UK Heart Failure Guidelines Raise Some Eyebrows
8/23/2011

8/17/11 (Forbes) - Much of the controversy revolves around the relative weight given to echocardiography and natriuretic peptides in the diagnosis and treatment of heart failure. The updated NICE guidelines recommend that for the diagnosis of heart failure in patients with no history of MI, echocardiography should be used only if natriuretic peptides are raised. Peterson and Rumsfeld point out that both the ESC and ACC/AHA guidelines recommend that all patients with the signs and symptoms of heart failure should have an echocardiogram. The NICE position, they say, “may be questioned because of the utility of echocardiography for not only measuring left ventricular function but also for detecting structural or valvular heart disease, pulmonary hypertension, and pericardial effusion.” Read article

Diagnosing and Treating PAH
8/23/2011

8/18/11 (The Egyptian Gazette) - One such disease is pulmonary arterial hypertension (PAH). It is caused by a continuous narrowing and clogging in pulmonary blood vessels, which leads to high blood pressure of the pulmonary arteries. According to Dr Awad Tag el-Din, Head of the Egyptian Association of Pulmonary Diseases, PAH is very dangerous in afflicting these pulmonary arteries that connect the lungs with heart. Read article

Healing Heart Defects: Indigent Parents in Nigeria Cry Out for Help
8/23/2011

8/21/2011 (Vanguard) - Mercy Ogbosu was distraught when she took her 10-year-old daughter, Christiana, to the Lagos University Teaching Hospital (LUTH), Idi-Araba, in August 2010, and was told the little girl had a hole in the heart. Read article

Pulmonary conference in Cairo: Diagnosing and Treating PAH
8/18/2011

Dr. Tag el-Din, Head of the Egyptian Association of Pulmonary Diseases, spoke at a recent conference in Cairo about the  frequent misdiagnosis of PAH. Dr. Tag el-Din explains what symptoms to look for and he discusses how increased awareness of PAH is leading to more incidences of the disease worldwide. Read article

Transplant Pioneer Celebrates 19 Years of Health
7/25/2011

7/22/2011 (Saskatoon CTV News) - It was 19 years ago that Sherry Duncan Paterson underwent a double-lung heart transplant, making her a pioneer in the Canadian transplant world. 19 years ago, after the birth of her second daughter, Paterson was diagnosed with a rare disease called primary pulmonary hypertension. Read article

Graduate Student One Step Closer to Finding Cure for Cardiovascular Disease
7/12/2011

7/10/2011 (The Gateway) - A doctoral student at the University of Alberta has made a discovery that could lead to a cure for a disease which usually leaves approximately three years of life once diagnosed. Gopinath Sutendra has been researching pulmonary arterial hypertension, a disease characterized by excessive cancer-like growth of the cells in the pulmonary vessels of the heart, which provide blood to and from the lungs. These vessels end up getting blocked, resulting in right heart failure. Read article

Risk of Blood Clot to Lungs From Sitting too Much: Study
7/5/2011

(Heartzine.com) - A study published in the British Medical Journal today has a finding which is relevant to a large percentage of the population; it describes an increase in the risk of developing pulmonary embolism for women who sit more than forty-one hours a week outside of work. Read article

Heart and Lung Transplant Recipient in Australia Hoping for a Breakthrough
7/5/2011

(inMyCommunity) - BORN with a hole between the two atria of his heart, and with the vital organ essentially operating back to front, Mike Lambe has always known he would one day need a heart transplant. He developed pulmonary arterial hypertension and received new lungs along with his heart just over six months ago. Read article

Global partnerships...greater strength and knowledge for us all
6/30/2011

The following is a copy of an entry from PHA President Rino Aldrighetti's blog: Empowered by hope - a PHA diary 

Global partnerships...greater strength and knowledge for us all

Several months ago, PHA announced the U.S. and international recipients of PHA's 2011 Tom Lantos Innovation in Community Service AwardsPH Israel was one of the awardees.  Here is a note from Dr. Yosef  Gotlieb to PHA's Senior vice president, Adrienne Dern, on the outcome of their project.

Dear Adrienne,

It is with pleasure that I am writing to let you know that the conference sponsored by the Israel Pulmonary Hypertension Association on Thursday, June 16th was a resounding success.

Nearly a hundred participants came to the meeting on "Pulmonary Hypertension: Profile of the Disease" to hear Israel's top experts lecture on the various aspects of PH: symptomatology, typology, diagnostics, therapies, and research horizons for treatment and diagnosis. The number of those in attendance was high despite a doctor's strike which required many senior physicians to substitute for younger doctors in the clinics and wards. Despite this, the auditorium was packed and we found ourselves having to add chairs throughout the first two sessions.

A panel on the complexity of care included a family physician, a mental health and support group worker, the director of a pulmonary rehabilitation unit at a children's hospital. a medical technology professional, and myself representing the patient's perspective. A vigorous dialogue ensued between pulmonary specialists and primary care physicians. The session ended with the promise of continuing exchange and engagement; as this was a major goal of the conference, we were very pleased to see this take place. We, the organizers and the participants who provided feedback, left the conference with the feeling that that the Israel PH community had been significantly expanded and strengthened by the conference and that there would be continuing impact on the target group we had sought to influence, namely, the primary care community.

Of those who attended the event, which was conducted in a decorous setting at a seafront Tel Aviv hotel, most were clinicians (physicians and nurses); a number of professors and heads of departments were also present. We have documented the meeting (some of the initial photos are attached) in stills and video and look forward to sharing our experience with other PH associations. We have already begun discussing possibilities for the next event to be held in what we hope will be a continuing series of meetings focused on professional and patient education.
On behalf of the Israel Pulmonary Hypertension Associationand myself, I want to reiterate how grateful we are to the sponsors of Tom Lantos Innovation in Community Service Awards and to Representative Lantos' family for enabling us to hold the event. Further, I wish to express again our gratitude to you and the Pulmonary Hypertension Association for facilitating our receipt of the funding necessary to implement this project.

We are much inspired and encouraged by the Pulmonary Hypertension Association. May you and the Association go from strength to strength.

Truly yours,

Yosef

Yosef Gotlieb, PhD

There's a lot more to read about the gvibrant and growing global PH community in the International section of PHA's website!

Viagra Keeps Newport Baby Alive
6/30/2011

6/29/2011 (South Wales Argus) - AT JUST five months old, little Cerys Small has survived three open heart operations and is being kept alive thanks to daily doses of Viagra. Read article

Why Does Western Australia Lag Behind in Organ Donation?
6/10/2011

(Australian Broadcasting Corp.) - The Perth mother of two has a chronic lung condition and is one of about 1,700 people Australia-wide in need of an organ transplant. "During my second pregnancy three and a half years ago I became sick and developed pulmonary hypertension. As a result I need a double lung transplant and have been on oxygen 24 hours a day ever since." Read article

Twitter Helped Doctors Tell Patients Where to Get Meds After Japan Earthquake
5/13/2011

5/12/2011 (Scientific American) - In the hours after the magnitude 9.0 earthquake and massive tsunami hit Japan in March, essential infrastructure and communication were cut off, leaving many of the disasters' survivors without access to phones, electricity or water. And those who were on essential medications were on the cusp of losing their lifeline, too. Read article

Mother in Australia Seeks Answers for Daughter’s Death
5/13/2011

(The West Australian) - A grieving Spearwood mother wants an independent inquiry into the death of her daughter from a suspected blood clot two weeks after she was sent home from hospital after bungled care. She wants to raise awareness that even seemingly healthy young people can suffer pulmonary hypertension, a form of high blood pressure in the arteries of the lungs sometimes linked to blood clots. Read article

Four-Year-Old Boy "Shortest" in UK to Get New Lungs
5/13/2011

5/11/2011 (BBC News) - A four-year-old boy is the shortest person in the UK to have a successful lung transplant, doctors said. Surgeons at Great Ormond Street Hospital in London carried out the transplant involving Mason Lewis, measuring 93cm (3ft) tall. Mason, of Atherstone, Warwickshire, has suffered from pulmonary hypertension since birth. Read article

Pfizer’s Revatio Receives European Approval to Treat PAH in Children
5/10/2011

5/9/2011 (InPharm) - The European Commission has given the green light to phosphodiesterase-5 inhibitor Revatio (sildenafil) for pediatric patients. Read article

International Highlights: What’s Going on Around the World?
4/19/2011

Did you know that there are more than 50 PH associations operating worldwide? Just a few decades ago, the resources, support, and encouragement that these groups offer today just didn’t exist! Here’s a round-up of some highlights from our friends overseas, pointing yet again to the incredible energy of our global PH community! Read more

CHMP Post-Authorisation Summary of Positive Opinion for Revatio
3/21/2011

LONDON, 3/17/2011(PharmaLive) -  On 17 March 2011 the Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion recommending a variation to the terms of the marketing authorisation for the medicinal product Revatio. The marketing authorisation holder for this medicinal product is Pfizer Ltd. Read article

Raynaud's Responds to Sildenafil
3/10/2011

3/9/2011 (MedPage Today) - Sildenafil (Viagra) may also help treat Raynaud's phenomenon. In a small randomized, double-blinded, and placebo-controlled trial, the drug led to a significant percentage reduction in the number of weekly attacks of Raynaud's phenomenon, according to Ariane Herrick, MD, of the University of Manchester in England, and colleagues. Read article

‘Pulmonary Hypertension… A Breathtaking Disease’ European Awareness Campaign Launched on Rare Disease Day
3/3/2011

2/28/2011 (NEWS.GNOM.ES) - Events taking place on February 28 in Brussels and Vienna mark the launch of a new European campaign to raise awareness of pulmonary hypertension. Read article

PH Medication on Way for Boy in Australia
1/18/2011

1/14/11 (Fraser Coast Chrinicle) - Julian Summers has defied the odds for seven years but when flood waters separated him from life-saving medication his family faced their toughest challenge yet. Read article

EU Agency to Review Other PAH Drugs
12/23/2010

12/16/10 (the heart.org) - The European Medicines Agency is to review the hepatotoxic profile of two other endothelin receptor antagonists (ERAs) for the treatment of pulmonary arterial hypertension following the withdrawal last week of Pfizer's ERA sitaxentan (Thelin) due to two cases of fatal liver injury linked to the drug. Read article

Pfizer Stops Clinical Trials Of Thelin® And Initiates Voluntary Product Withdrawal
12/23/2010

12/10/2010 (Bloomberg) - Pfizer Inc. is recalling its lung drug Thelin worldwide and halting trials of the medicine after it was linked to potentially life-threatening liver damage. No new patients should be prescribed Thelin and those receiving it should be transferred to other therapies, Pfizer, based in New York, said in a statement. Read article

Nigeria Records First Devised Closure of Hole in the Heart
11/30/2010

11/24/10 (Vanguard) - A Nigeria hospital, for the first time in the history of West Africa, has recorded a land mark achievement in the field of medicine when it successfully pioneered the first devised closure of a hole in the heart called “Patent Ductus Arteriosus” (PDA) by non surgical intervention in a three-year-old child. PDA is a congenital heart disease commonly seen in early childhood and can lead to lung congestion, pulmonary hypertension and enlargement of the heart. Read article

Lung Disease Common in Adolescents With HIV in Zimbabwe
11/15/2010

11/13/10 (aidsmap) - Dr Ferrand presented results of a cross-sectional survey of 116 consecutive older children and adolescents with HIV presenting for care at two HIV clinics in Zimbabwe. Among these patients 66% had chronic cough, 21% had a restricted ability to exercise as a result of reduced lung function, 40% had hypoxia, 44% had reduced lung function and 7% had pulmonary hypertension. Read article

Breakthrough in Diagnosis and Treatment of Pulmonary Hypertension
10/27/2010

10/25/10 (Toronto Sun) - A Canadian researcher may have discovered a breakthrough diagnosis - even a cure - for pulmonary hypertension. New research indicates a protein, dubbed PIM-1, is high in patients with the condition. The higher the PIM-1 levels, the more severe the patient's pulmonary hypertension. Read article

UK PH Patient Beat the Odds to Succeed in Business With "Joey Pouch"
10/21/2010

10/6/10 (Business Cornwall) - A Truro entrepreneur, diagnosed with PH nine years ago at the age of 20, has been named a semi-finalist in the 2010 Barclays Trading Places Awards, which recognises people who have beaten the odds to succeed in business. Daniel Male, who designs and creates pouches to conceal medical devices, is now hoping to win a share of the £50k prize package just six months after setting up on his own. Read article

Community of Angels Meets to Defeat Pulmonary Hypertension
10/12/2010

10/11/2010 (Green Prophet) - Israeli and Turkish delegations joined European and American counterparts in Spain to draw attention to environmental factors causing a killer disease. Strengthening community will be an integral part of a sustainable future.  A “community of angels” referred to the delegates from more than 20 countries in the European Union, Israel, Turkey and the United States who convened in Castelldefels to discuss Pulmonary Hypertension. The European Pulmonary Hypertension Association conference took place just outside of Barcelona from Sept. 18-20th. Read article by Dr. Yosef Gotlieb

Noticias del Puerto Rico sobre la campaña ‘Regala Un Beso Azul’
8/27/2010
24 Agosto, 2010 (ElNuevoDia.com) -  Lea un reportaje que se publicó en el periódico El Nuevo Día sobre el GAPHPPR y la campaña Regala Un Beso Azul y vea este video que fue preparado durante la actividad que se realizó en Las Catalinas Mall.
Brave Natalie To Walk Miles In Aid Of Her Charity
8/23/2010
8/21/10 (Scotsman.com - Scotland) - Nine-year-old Natalie is a rare childhood sufferer of Primary Pulmonary Hypertension. Tomorrow she will take part in her annual walk - Natalie's Walk - which was set up by her gran, Helen Archibald, to raise funds for the Pulmonary Hypertension Association and Great Ormond Street Hospital in London, where Natalie has been treated since her diagnosis three years ago. Read article
Pucker Up Record Attempt
8/23/2010
8/19/10 (Times Online - New Zealand) -  Blue lips could be a sign someone has pulmonary hypertension, but this weekend it’s more likely to show they’re about to kiss their way into the record books. Kiwis are joining people from 28 other countries in a new Guinness World Record attempt. For more information, log onto PuckerUp4PHRead article
Pulmonary Hypertension Charity (PHA-UK) Launches Blue Lips Campaign
7/8/2010
7/6/10 (Healthcare Republic) - Charity Pulmonary Hypertension Association UK (PHA-UK) aims to encourage over 40,000 people to provide a blue lipstick print of their lips to set a new Guinness World Record. A campaign urging participants to wear blue lipstick to raise awareness of pulmonary hypertension launches with National Kissing Day on Tuesday. Read article
European Respiratory Journal Publishes Phase II Study of Investigational Oral Agent Riociguat in Treatment of Pulmonary Hypertension
6/15/2010
6/11/10 (PR Newswire) - Bayer HealthCare Pharmaceuticals, Inc. announced that the study "Riociguat for chronic thromboembolic pulmonary hypertension and pulmonary arterial hypertension: a phase II study" was published online this week by the European Respiratory Journal. Riociguat (BAY 63-2521) is an investigational oral agent being studied for the potential treatment of PH that targets soluble guanylate cyclase (sGC), a receptor for nitric oxide (NO). Read press release
Fighting an Invisible Illness: Pulmonary Hypertension
6/14/2010
6/12/10 (The Australian) Australia - When Jenny Hodges was diagnosed with pulmonary hypertension at 29 she'd never heard of it, despite her background in nursing. "When I was first diagnosed, I was told that successful treatment meant you're not getting any worse," Hodges says. "It was a pretty scary time, especially as it did actually get worse." Pulmonary hypertension is different from regular hypertension, a raised general blood pressure level. Instead, it occurs when blood pressure increases in the arteries of the lungs, causing strain on the heart and reducing the amount of oxygen that can reach the rest of the body. Symptoms include fatigue, shortness of breath, chest pain and blue lips. Read article
Blue Kisses Raise Money for Sisters' Charity
5/27/2010

blue lips kiss5/21/10 (The Jewish Chronicle Online) United Kingdom - Two sisters have launched a world record charity attempt to raise awareness of pulmonary hypertension, an incurable lung condition which claimed the life of their sister. Prestwich-based teachers Kerry Freedman, 36, and Abbie Kohanzad, 28, donned blue lipstick in support of charity the Pulmonary Hypertension Association - United Kingdom (PHA-UK), which is hoping to get 40,000 blue lipstick prints across 23 countries to smash a Guinness world record. The blue-lipped sisters also completed the 10-kilometre Great Manchester charity run wearing T-shirts featuring a picture of their sister Victoria Lynn, who died of the condition in 2003 aged 20. Blue lips are one of the signs of the rare condition which affects 4,000 people in the UK.

The Pulmonary Hypertension Association (PHA) is joining PHA-UK in their PuckerUp4PH campaign. Be sure to visit the PuckerUp4PH kissing booth at our 9th International PH Conference and Scientific Sessions June 25-27.

Read article | Visit PuckerUp4PH website | Register for Conference
Give a Blue Kiss for Deadly Lung Illness
5/27/2010
5/20/10 (Echo News) United Kingdom - Living with the fear that your heart could give out at any moment is something brave Karen Farminer knows all about. Karen, 50, has been coping for more than 22 years with pulmonary hypertension. Karen will shortly be joining forces with members of 29 pulmonary hypertension patient groups across the world, including the Pulmonary Hypertension Association here in the U.S., to raise awareness of the condition as they try to get more than 40,000 people to provide a blue print of their lips – using blue lipstick – to help set a new Guinness World Record. As well as getting people to “Pucker Up 4 PH," Karen and friends will distribute information on pulmonary hypertension. Read article | Visit PHA-UK's PuckerUp4PH website
Gene Therapy May Be Effective in Treating Pulmonary Arterial Hypertension
5/27/2010
5/18/10 (Physorg.com) Australia - Gene therapy has been shown to have positive effects in rat models of pulmonary arterial hypertension (PAH), according to researchers at the University of Adelaide in Australia. Read article
Pucker Up to Raise Pulmonary Hypertension Awareness
5/18/2010
5/17/10 (Oxford Mail) United Kingdom - A woman wants to help break a world record to raise awareness of a disease which has prevented her having children. Lynsey Pegram, 32, from Witney, suffers from the incurable lung condition pulmonary hypertension (PH) and may soon need a heart and lung transplant. Now she is urging people across Oxfordshire to join an estimated 40,000 others around the world who are donning blue lipstick to raise the profile of one of the main symptoms of the disease. Read article | Visit PHA-UK's PuckerUp4PH site
Pregnant Women Warned of Antidepressants Danger to Their Unborn Child
5/18/2010
5/16/10 (Daily Mail Online) United Kingdom - Women who use antidepressants while pregnant are being warned by health chiefs about the risks to their unborn child. The Government’s medicines watchdog advised doctors there is an increased risk that babies will be born with a rare lung condition if expectant mothers take drugs such as Prozac and Seroxat. The Medicines and Healthcare products Regulatory Agency (MHRA) is recommending they are monitored more carefully because of the risk of developing persistent pulmonary hypertension after birth. Read article
High-Altitude Research Advances Low-Altitude Medicine for Pulmonary Hypertension and Pulmonary Edema
5/7/2010

5/4/10 (EurekAlert!) Philadelphia, Penn. - High altitude medicine is a "natural research laboratory" for the study of cardiovascular physiology and pathophysiology. Yves Allemann, MD, FESC, Swiss Cardiovascular Center, University Hospital, Bern, and Urs Scherrer, MD, Centre Hospitalier Universitaire Vaudois, Lausanne, have assembled an international group of leading authorities to contribute to a special issue of Progress in Cardiovascular Diseases dedicated to high-altitude medicine and novel insights into disease mechanisms provided by high-altitude research.

The article by Scherrer et al demonstrates how studies at high altitude have provided important insights into fundamental mechanisms underpinning pulmonary hypertension and pulmonary edema in humans. They show how these insights have been translated into novel approaches for the treatment of patients suffering from these problems at low altitude. Finally, it provides some hints on how the natural research laboratory of high altitude may provide novel insight into cardiovascular disease mechanisms in the future.

Read full press release

Second National PH Conference in Sao Paulo ends with “tears and excitement”
4/16/2010

2nd annual Brazilian conferenceBrazil’s PH Association, ABRAF, held its second national conference on November 14, 2009, in Brazil’s largest city, Sao Paulo. The meeting brought together 50 patients from all over Brazil. To better standardize PH treatment and care, which is currently inconsistent among states, physicians and patients discussed the creation of national protocols for PAH management. A strong supporter of the national protocol, the President of the National Human Rights Forum, signaled his commitment to advocating on behalf of the PH community.

Beyond the major discussion of institutionalizing national PH protocols, conference attendees also participated in multiple scientific sessions. Cristiane Kayser, MD, a rheumatologist from UNIFESP (Universidad Federal de Sao Paulo), discussed the basic science of PH and its treatments. Jaquelina Ota, MD, also from UNIFESP, discussed the mechanism of prostacyclin (epoprostenol) and endothelin antagonist therapies. Prostacyclin, a continuous intravenous infusion PH therapy currently unavailable in Brazil, was especially intriguing to the patients. Dr. Ota also discussed the challenges in making epoprostenol available in Brazil, including establishing a setting with adequate personnel for monitoring equipment and educating patient users.

Other sessions focused on providing day-to-day advice for patients, including a presentation by a nutritionist about the right diet for a PH patient. The conference concluded with testimonials from several patients and a video about Brazil’s first national PH meeting, which brought both tears and excitement to the 50 patients in the audience.

Learn more about ABRAF at www.respirareviver.org.br and meet the group’s leadership at Conference 2010!

Boletín Trimestral de la Sociedad Latina de Hipertensión Pulmonar
3/14/2010

Segundo Boletín de la Sociedad Latina de Hipertensión Pulmonar, con artículos sobre “II Encuentro Colombiano de Hipertensión Pulmonar Arterial” por Dr. Alejandro Londoño, el “Reunión en Atenas-Grecia” por Dr. Jaime Morales, una cuenta de Iris Matías: “Me dije: ¡Vas a vivir! ¡Vas a vivir… y punto!” y mucho mucho más. Boletín (PDF)

Healthcare Professionals Climb Mt. Kilimanjaro to Raise Awareness of Serious Lung Disease
2/24/2010

2/19/10 (PRNewswire) Silver Spring, Md. - The Pulmonary Hypertension Association (PHA) announced today that three pulmonary hypertension (PH) specialists began their eight-day “Path to a Cure” journey to the 19,341-foot summit of Mt. Kilimanjaro to raise global awareness of PH, a disease that affects the heart and lungs. Robert Frantz, MD, Jessica Lazar, MPA, PA-C, and Raymond Benza, MD, (pictured right) are climbing Africa’s highest peak in an effort to bring attention to this rare and serious disease and to raise funds for PH research and other programs benefiting the PH community.

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PH Israel’s Ninth Annual PH Conference
1/14/2010

Map showing location of Israel conferencePH Israel hosted its Annual PH Conference on December 8, 2009. Leaders Joni Berg and Aryeh Cooperman kicked things off with a description of the association’s work and achievements in the last year. Afterward, a speaker from the National Transplantation Service spoke about how donors are identified, how patients are put forward for transplant, and how recipients are selected for organs. Committee Chair Miriam Don described the importance of having this candid conversation. “For us, that was the most important part because there are only two transplant hospitals in Israel, with all the lung transplants being carried out by one PH specialist,” she said. A lack of understanding about how decisions are made regarding who receives transplants was causing patients to fear changing centers to find the best PH care. “We wanted to kill that myth and also to provide information,” Miriam explained.

The expository portion of the discussion was followed by a real-life patient story, a personal account from someone who had undergone a transplant and who could describe the process and how it affected her life.

Finally, a PH specialist spoke about combination therapy, including the different processes of which medications effect on which parts of the system, and about side effects of combination therapy - noting which medications should not be combined and which might compromise another’s effectiveness.

The event was not just about education, however. Guests were also invited to have a little fun in support of the association and its work. The group held a raffle for the first time, offering an iPod Touch - a donation from a pharmaceutical company - as first prize. “It was amazing,” Miriam said of the response. “We were completely taken by surprise. People where queuing up and buying 10 or 15 tickets each... We ran out of tickets and had to write numbers and names on pieces of paper which we had to cut up!” At the end of the day, a buffet dinner was served and guests enjoyed taking their meal with piano and flute music creating an elegant, relaxed atmosphere.

“On the whole we think it went very well and was successful,” said Miriam. “About 100 people attended, which is good for our association.”

Get in touch with PH Israel and learn more about their work!

Latino Support Group launches in South Florida!
12/16/2009
Florida Support GroupLast month, 22 Latino members of the PH community -- 8 patients and 14 family members -- met for the first time in South Florida with the goal of providing hope for life and raising PH awareness among the Latino population. They plan to meet monthly, with the motto that “Life is a matter of positive attitude more than physical limitations.”

Led by PH patients Migdalia Denis and Nora McKeehan, the first meeting of the Latino Support Group of South Florida saw the emotional relief of its participants as one of its biggest achievements. “Everyone introduced themselves and shared their personal PH journeys. Besides being our first time together, we created a comfortable and warm atmosphere where we could freely express our deepest feelings. All of us cried and laughed a lot, it was very emotional,” stated Denis.
Florida Support Group
In addition to emotional support, the group leaders explained some general facts about the disease, distributed brochures in Spanish about PH symptoms and treatments and addressed the topic of depression in PH patients with the aim of helping them manage emotions.

For next meetings, they plan to host different specialists to give patients and family members useful insights about both serious and informal topics related to PH. They will invite a psychologist to explain how to avoid self-destructive thoughts and gain control of situations; Dr. Hernando García to talk about the disease from a healthcare professional perspective, and a laughter-yoga specialist to talk about an innovative technique that helps in stress and anger management. They will also distribute new informative guides for patients in Spanish.
 
Latino of South Florida is the fourth Spanish speaking PH support group created in the U.S. The others are based in Texas and Puerto Rico. Find their contact information at the Support Group section of our website!
First-Ever Canadian PH Conference Announced for September 2009!
8/1/2009
PHA Canada logoPHA Canada and HTAP Quebec are partnering to plan for the first Eastern Canadian PH Conference, which will be held in Montreal from September 25-27, 2009.

The event will bring together patients, caregivers and the top PH specialists in the country, and will feature lectures and educational sessions in both English and French, the country’s two official languages. PHA Canada hopes to organize the conference every two years, hosting it in various major Eastern Canadian cities.

Learn more at PHA Canada's website, or contact PHA Canada’s National Manager at ASlubowska@PHACanada.ca.
Kissing for a Cure: PHA-UK Invites you to join a global effort to raise awareness with Blue Lip Idol
7/2/2009
Pucker up for PHLast year, PH community members around the world put on blue lipstick and participated in PHA-UK’s Pucker Up 4 PH campaign, which raised awareness of PH by collecting blue kisses on postcards. The groups gathered more than 9,500 lip prints and inspired communities everywhere to pucker up in support of PH awareness.

PHA-UK hoped to use the momentum gained from the support of 19 PH associations and support groups from around the world to break a Guinness World Record in 2009 by collecting 40,000 blue lip prints. The risk of N1H1 made it necessary to postpone that campaign until 2010. In response, the group has quickly switched gears and has launched an exciting summertime campaign, Blue Lip Idol.

As of July 6, 2009, PHA-UK is collecting photos that show PHers and their pals sporting their best puckers. One amongst you or your network of friends or contacts could be selected as the official Blue Lip Idol – and will be invited to make an impression of their world-famous smooch for use as the Pucker Up 4 PH logo in 2010!

You can show your support and raise awareness in a fun way by uploading your blue lip digital photos to PuckerUp4PH.com. But you have to hurry! The entry period will close by the end of the summer, with the winning lips announced during the UK’s PH Awareness Week, September 20-26, 2009.

Visit PuckerUp4PH.com or contact Christine at International@PHAssociation.org or 301-565-3004 x760 for more information or to get involved!
Spring 2009 Advances in Pulmonary Hypertension to reach readers soon!
6/5/2009
Advances coverAdvances in Pulmonary Hypertension was introduced in 2002 as the first medical journal devoted to the study of PH. The quarterly journal reaches more than 40,000 physicians in over 63 countries.

Since spring 2008, the “International Corner” of the journal has featured worldwide news, clinical experiences, and research findings. This spring, Dr. Anne Keogh of Australia contributes. The latest issue will reach readers at the end of July.

Contact Christine at International@PHAssociation.org to add your PH physician to the mailing list.

Read Advances in Pulmonary Hypertension online! Look at past issues of the journal, and read about Dr. Julio Sandoval’s perspective on the 2008 International PH Conference and Scientific Sessions (available in English and en Español!), Dr. Adam Torbicki’s thoughts on transplantation and treatment in Europe and Poland (also available po polski), and much more!
Check Out AMiHAP Brazil’s TV Spot and Lend an Ear to PHA-UK’s EmPHAsis, On Air!
6/1/2009
AMiHAP, the Brazilian Mining Association of PAH, released a TV commercial educating the public about PH and available treatments. The campaign aims to give hope to both PH patients and those who might be diagnosed with the illness by focusing on the effects that the right treatment can have in allowing PH patients to lead social, professional, and happy lives. More information, available in Portuguese, is available on the campaign website.


Across the Atlantic, PHA-UK has conquered the airwaves! This spring, they aired the first edition of a radio program for PHers in the UK (and for anyone who has access to a computer! The show is available on their website). EmPHAsis ‘on air’ is a dynamic broadcast that invites patients, caregivers and experts in the field of PH to discuss everything from intimacy to tattoos and share their experiences and ideas – even their poetry!
Join in the International Work Toward a Cure for PH: Refer your doctor to PH Clinicians and Researchers
5/27/2009
PHCRPHA offers medical professionals and PH researchers a dedicated membership section that connects those who work against PH around the world. If you are a physician or researcher who needs to know more about PH, and to be engaged in a global network of experts, specialists, and colleagues, visit the PHCR section of our website for information on how to apply.

By joining PHCR, you support an international effort to educate and raise awareness of PH. You will be among the first to know about PH developments and will receive PHA's quarterly medical journal, Advances in Pulmonary Hypertension.

You will be connected through the PHCR email listserv to physicians and researchers from all over the world, and you will be featured on PHA’s Find-A-Doc website listing. Membership in PHCR also grants access to an online medical resources section that includes consensus statements from PHA’s Scientific Leadership Council.

PHCR members receive discounted registration rates to PHA’s biennial International PH Conference and Scientific Sessions (next held June 26-27, 2010, in Orange County, Calif.), as well as a complimentary copy of PHA’s Patient Survival Guide, which has already been translated into five languages. You also become a member of PHA and receive the benefits and opportunities of membership.

Let your doctors know about PH Clinicians and Researchers. Encourage them to get plugged into the largest international network of PH treating physicians and the most innovative, important research on PH. Direct them to PHA's Doctor Benefits to learn more about why they should join.
Congratulations PHA-UK and PHA Canada! Defending Access to PH Treatments: Victories in Canada and the United Kingdom!
4/17/2009
The PH community in the UK won a year-long battle to defend access to PH treatments and the integrity of specialized PH treating centers on April 6, when the country’s National Institute for Health and Clinical Excellence dropped a proposal that threatened the withdrawal of a range of life-saving PH treatments and cast doubt on the future of eight PH centers. More than 32,000 community members supported the opposition to the N.I.C.E. proposed guidelines.

Learn more about PHA-UK’s work!

The fight for PH care and treatments is one that must be fought on many fronts, but the dedication of PH communities worldwide ensures that it is won again and again.

On May 15, PHA Canada and the PH community in Ontario countered restrictions imposed by the Ontario Public Drug Program that limited the ability of physicians to adequately and efficiently treat PH. The victory overturned policies that had been in place for a year.

PHA Canada continues to work hard to win access to combination therapies. For more information about the OPDP victory, visit PHA Canada's website.

The successes of PHA-UK and PHA Canada are important boosts to PH communities in other countries that face similar threats and restrictions.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.