April 3, 2013

       
 
PHA News, Pulmonary Hypertension Association, Empowered by hope
Latest Blog Post from PHA's President
    May 5: World PH Day

May 5: World PH Day is Coming ... and www.WorldPHDay.org is Here!

In 2011, Juan Fuertes and Irene Delgado of Asociación Nacional de Hipertensión Pulmonar (ANHP), the Spanish PH association, had a big idea. It was also a big risk. Juan and Irene thought that the creation of a World PH Day would help expand awareness of the disease. » Read more

What's In This Issue
   

» Spotlight On... Stories for Mom's & Dad's Days
» Get Smart
» Living Better with PH

» Medical Community Bulletin
» Also of Interest
» PH News Headlines

Spotlight On...
    Bolivar Family

Hey, Parents with PH! We Can Help You Put PH in the Headlines

Mother’s Day and Father’s Day are just around the corner. If you’re a parent living with PH, now is a perfect time to pitch your story to reporters and educate your community about PH. Best of all, PHA has a template press pitch to help you reach out to reporters. » Learn more

Get Smart
    PH Treatments: What's on the Horizon?

PH Treatments:
What's on the Horizon?

April 10, 2 p.m. ET/11 a.m. PT
Presenter: Michael McGoon, MD

It is an exciting time for PAH research. Over the past 17 years, many PAH therapies have been approved by the FDA. Join Dr. Michael McGoon for a presentation about current treatments and others in the pipeline. » Register now

Living Better with PH
    Veggies

Can What You Eat Affect Your Disease State?

April 19, 2 p.m. ET/11 a.m. PT
Presenter: Anna Hemnes, MD

Join Dr. Anna Hemnes for a presentation on the relationship between nutrition and disease, and learn how modifying your lifestyle can improve your disease state. » Register now

Medical Community Bulletin
    PHA Online University

Inotropic and Vasopressor Therapy for Decompensated Right Heart Failure

April 9, 1:30 p.m. ET/10:30 a.m. PT
Presenter: Gautam Ramani, MD

Looking to learn more about heart failure related to pulmonary hypertension? Join Dr. Gautam Ramani, an associate professor of medicine at the University of Maryland, as he discusses the use of vasopressor and inotropic therapy in PH. This webinar will include an opportunity for Q&A with Dr. Ramani as well as free CME. » Register now

    Building Medical Education in PH

NYC PH Symposium

May 10, New York, N.Y.
Beth Israel Medical Center presents the first NYC PH Symposium, Shining A Light on Pulmonary Hypertension. The CME-accredited course aims to provide medical professionals with the knowledge and tools necessary to screen and treat PAH appropriately. Learn more | Register now

Also of Interest
    PHA flame image

PHANews Issues a Correction

The last issue of PHANews included a link in PH News Headlines to Pulmonary Hypertension Highly Prevalent in Hemodialysis Patients. This link connects to a website of "Renal and Urology News," which misidentifies the study findings and mischaracterizes the findings as pulmonary arterial hypertension (PAH). PHA wishes to thank Peter Leary, MD, for bringing this to our attention. According to Dr. Leary, there is a significant increase in pulmonary pressure in patients on dialysis (especially hemodialysis), which is associated with outcome. Most of these patients, however, have elevated pressures related to increased cardiac output or left heart disease and not PAH.

PH News Headlines
   

Research & Treatment News
» FDA Again Rejects United Therapeutics Application for Oral Tresprostinil

» First 'Breathing Lung' Transplant on East Coast Using OCS Lung

» Biotech Company Partners with U.K. Universities on PAH Drug Treatment

» Next-Gen DNA Sequencing Advances Rare Disease Diagnosis

» Qualified Sites the Biggest Issue for Rare Disease Trials

» Hospitals Question Medicare Rules on Readmissions

Updates from PHers Around the World
» Vienna Zoo Run To Take Place in June

» 22-Year-Old Stacie Pridden Awaits Heart-Lung Transplant

» More News

Connect with PHA

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Email a mentor. Patients and caregivers are ready to support you.

Telephone Support

Caregivers
April 17, 2013
1:30 p.m. ET/10:30 a.m. PT

Parents
April 18, 2013
8:30 p.m. ET/5:30 p.m. PT

Patients
April 25, 2013
8 p.m. ET/5 p.m. PT

Upcoming Events

April 13, 2013
Spur a Cure for PH
Phoenix, Ariz.

April 19, 2013
2nd Annual Kayla Rubio Memorial PH Bowl-a-Thon
Wantagh, N.Y.

April 20, 2013
5th Annual Scramble for a Cure
Las Vegas, Nev.

» Go to the Events Calendar

Generation Hope Blog "Calling All GenHope!"

Video Spotlight

6-year-old Weston Keeton on Philadelphia's Fox 29

Easter weekend was extra-special for Weston Keeton, a 6-year-old pulmonary hypertension patient. He has been in intensive care at the Children's Hospital of Philadelphia for a year while he waits for a heart and lung transplant. He and his large, loving family were guests on Philadelphia's Fox 29.  » Watch now

Coping Resources
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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.