February 2012

       
PH International Quarterly
Dispatcher's Notes
   

Dear Friends,

This is an exciting time for PH associations around the world. This Winter 2012 issue of the PH International Quarterly newsletter focuses on a variety of events and programs for the PH community: from Rare Disease Day, to PHA's 10th International PH Conference, to World PH Day, read about all of the exciting happenings worldwide!

We welcome your feedback to help us make PH International Quarterly a valuable resource. If you’d like more information on any of these stories, email International@PHAssociation.org.

Meghan

Meghan Tammaro
International Services Manager
Pulmonary Hypertension Association 

What's In This Issue
   

» News from the Front: Rare Disease Day
» PHA's 10th International PH Conference and Scientific Sessions: The Power of One: From a Kitchen Table to Around the World
» Associations at Work: First World PH Day

News from the Front
   

Rare Disease Day

Rare Disease Day is an annual event created by the European Organization for Rare Diseases (EURORDIS) and supported by many other disease organizations all over the world. This year, Rare Disease Day will be celebrated on February 29, 2012, and all participating organizations will come together under the slogan "Rare but strong together." To learn more about Rare Disease Day activities taking place in Europe, visit their website. » Rare Disease Day website

In the U.S., the National Organization of Rare Disorders (NORD) is encouraging patients to raise awareness by reaching out to their members of Congress, making videos about their experience and contacting the press about the importance of Rare Disease Day.

    Migdalia Denis

CNN Interview: Migdalia Denis

Migdalia Denis, PH patient and leader of the Sociedad Latina de HP, recently had the opportunity to be interviewed on CNN's Notimujer, a program about notable women broadcast in Spanish. Here is what she said about her interview: "This interview summarizes my experiences through this process and the positive attitude towards life. After being diagnosed with PH my life changed; it became a lot better and I see things differently now. I moved from my home country to a place where I didn't even know the language but I got to meet a lot of great people who helped me through the journey. With no resources and many negative things along the way I found a way to make it through, day by day, and live one day at a time. My message is to never give up and continue your role in life by overcoming obstacles, bust most importantly, by being positive." » Watch Migdalia's interview (in Spanish)

En Español: Migdalia Denis, Presidente de Sociedad Latina de Hipertensión Pulmonar, entrevistada por Notimujer de la Semana CNN: “Mi participación como Notimujer de la semana el 16 de diciembre de 2011 fue bastante amena y resume en parte lo que logre para sobrevivir a la Hipertensión Pulmonar. Conversamos un poco sobre la fundación Venezolana de Hipertensión Pulmonar, así como también la Sociedad Latina de Hipertensión Pulmonar y el momento en el que fueron creadas en pro de difundir la información al resto de la población. Los recursos para conseguir las medicinas eran muy pocos y las posibilidades de sobrevivir a esta enfermedad no eran alentadoras pero con espíritu de lucha y muchas ganas de vivir, se puede conseguir hasta lo que se piensa imposible. Me mude de país y conseguí a mucha gente buena y de gran corazón que me ha ayudado en este proceso. La clave esta en ser perseverante y constantemente positivo para lograr una actitud de triunfo ante la vida y vencer los obstáculos.” » Vea la entrevista

10th International PH Conference and Scientific Sessions
   

Conference Banner

This year, PHA will be celebrating its 10th International PH Conference and Scientific Sessions, The Power of One: From a Kitchen Table to Around the World, from June 22-24, 2012! PHA's first Conference was held in 1994 with 100 patients and medical professionals in attendance. This year, PHA expects to host 1,400 patients, caregivers, medical professionals and global guests in Orlando, Florida, U.S.A.

PHA's Conference offers opportunities for every attendee: Scientific Sessions for medical professionals seeking to enhance their knowledge of PH, Patient/Family Led and Medically Led Sessions for patients and their families and Meet-Ups for the community. The Conference will feature 15 sessions led by PH patients, 40 sessions led by PH physicians and 15 different Support Group Meetings. The number of sessions offered for the Spanish-speaking community and sessions focused on pediatric PH has also increased.

Look for a special Conference issue of the PH International Quarterly in the next few weeks! The issue will contain information about all of the unique programming available for global attendees, including international receptions, meetings and the International Leaders' Summit.

» Visit the Conference website

Associations at Work
   

World Pulmonary Hypertension Day

The Asociación Nacional de Hipertensión Pulmonar (ANHP) has created the First World Pulmonary Hypertension Day to raise PH awareness on a global scale. This event will consist of a Scientific Symposium on May 4, 2012 in Madrid, Spain, followed by the main World PH Day events, a cocktail gala and the ANHP General Assembly on May 5.

Show your support for this ground-breaking day of PH awareness by offering your organization's endorsement. To date, World PH Day has been supported by a number of PH and related health organizations worldwide, including: PHA, PHA Europe, Sociedad Latina de HP, PHA Slovakia, PHA Japan, PHA Canada, PHA South Africa, SAPH (Saudi Arabia), PH Israel, PHA Norway, PHA Sweden, PHA Poland, FUNDAVHIP (Venezuela), PHA Hungary, PHA Latvia, EURORDIS, NORD, Federación Española de Enfermedades Raras, European Lung Foundation, American Thoracic Society, Scleroderma Foundation, Sociedad Española de Cardiología, Sociedad de Ruematología and European Respiratory Society. » Visit the ANHP website

Has your group raised awareness in the general public? Share your story with the global PH community by emailing International@PHAssociation.org.

    Israel Conference

Virtual PH Conference

PHA Israel has proposed a Virtual PH Conference for PH association leaders and patients around the world. The event is being led by Dr. Yosef Gotlieb and in his words, "The aim is to strengthen the PH community around the world by hosting a virtual meeting to supplement physical ones as a means of sharing information and resources and facilitating communication." This event will be held in conjunction with World PH Day and participants will be able to join the event through a video conference. The conference is tentatively scheduled for May 6, 2012.

More information about this event will be available soon. » Visit the PH Israel website

    Ann Arnott with PH New Zealand

U.S. Support Group Leader's Visit with PHA New Zealand 

Ann Arnott, U.S. support group leader in Kansas City, Missouri, recently vacationed for three weeks in Australia, New Zealand and Fiji. Ann knew the danger of being underprepared when traveling with PH, so she contacted PH associations in Australia and New Zealand for information about where she could go in a PH emergency. These email exchanges led to a face-to-face meeting with Sandy and Allan Edmondson, the leaders of the PH New Zealand group.

In Ann's words, "Sandy is a PH patient and Allan runs the New Zealand support group. They drove me to their home in Auckland where we talked a lot about PH. Allan stepped in to help when the original New Zealand support group leader became ill, and he ended up as the leader. It sounds like he and Sandy are doing a good job having regular meetings, but they face problems finding speakers, getting names of newly diagnosed patients and generally meeting the diverse needs and interests of their group. Sounds familiar!" Ann, Sandy and Allan were able to exchange ideas and tips for how to best reach patients in their geographic region.

Look for Ann's full story, with tips for traveling with PH, in the Spring 2012 issue of Pathlight.

   

What Has Your Group Been Up To?

Email International@PHAssociation.org and share your upcoming and ongoing projects.

Memorials
   

 

 PHeV logo

The international community is deeply saddened by the loss of Bruno Kopp, PH patient and leader of the German PH Association (PHeV). Bruno created the German PH association to help friends and loved ones suffering from PH. He was a remarkable leader and friend to the PH community. PHeV has posted a tribute to Bruno on their website. » Visit the PHeV website

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Newsletters and Journals

» PH Roundup: a benefit for members of PH Clinicians and Researchers and PH Professional Network 

» Advances in Pulmonary Hypertension: PHA’s medical journal for PH physicians

» PH Pulse: PHA’s newsletter for PH-treating allied health professionals

» Pathlight: PHA’s quarterly newsletter

» Mariposa: a newsletter of PHA Europe

» Boletín: a newsletter of the PH Latin Society

Submit Your News & Stories

Submit your news and stories for the Spring 2012 issue! Send stories (150 words or less), videos, photos and links to International@
PHAssociation.org
by May 1, 2012.

Submit links to International@
PHAssociation.org
to share your PH association’s newsletter in future issues.

 
 

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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.