Silver Spring, Md. (Apr. 15, 2016) – In recognition of World PH Day on May 5, the Pulmonary Hypertension Association (PHA) joins 80 fellow international organizations to celebrate progress made in their unified, universal fight against an often misdiagnosed life-threatening, progressive lung disease.
Pulmonary hypertension (PH) is increased pressure in the blood vessels of the lungs that can lead to death from right heart failure. With symptoms that include shortness of breath, dizziness and fatigue, appropriate therapy is often delayed when the disease is misdiagnosed as another illness, such as asthma. Envisioning a world without PH, PHA credits progress with treatment, care, awareness and research to PH community-serving associations around the world working as allies in the fight against the disease.
“In 25 years, here in the U.S., we’ve gone from zero to 14 treatments, which is as many or more than the number of drugs approved to treat all but two of the roughly 7,000 rare diseases,” said PHA President and CEO Rino Aldrighetti. “Many countries have seen similar progress. As an international PH-community, we stand with those worldwide who seek access to PH therapies. We’re empowered in our fight to conquer this disease and improve life for PH patients and families universally.”
This year’s World PH Day commemoration comes as PHA marks its 25th anniversary and one month before PHA’s International PH Conference and Scientific Sessions, where PH-serving organizations will gather patients, caregivers, families, clinicians, donors and researchers to network and exchange ideas and knowledge. The 2016 International Conference, June 17-19 in Dallas, Texas, is expected to draw nearly 2,000 people from over 30 nations.
In addition to hosting the International Conference, held every other year, PHA contributes to the world’s PH support, awareness, medical education and research through Our PH Library, which it launched in partnership with PHA Europe in 2015. The online resource receives global visits, with individuals in nations as diverse as India, Argentina and Algeria represented among the many countries accessing the library’s resources. PHA Online University, which provides certified medical training, has seen non-U.S. visits increase 31.5 percent from 2015 – 2016, on the heels of a 41.5 percent increase in non-U.S. visitor experienced the prior year. In addition, PHA mails its Advances in PH medical journal to 50,000 physicians worldwide each quarter. The U.S. association expects the global PH community to benefit further as it begins reporting data from its 2014-established PH Care Center accreditation and patient registry program and its recently launched Heart2CurePH (#Heart2CurePH) public awareness campaign.
In the U.S., PHA will recognize World PH Day 2016 with:
- A pre-World PH Day reception, where PHA will launch the Rino Aldrighetti: Leading from the Heart Fund, an opportunity for Silver Spring, Md., and Washington D.C.-area PH supporters to gather to honor PHA CEO Rino Aldrighetti for his 17 years of service ahead of his June 19 retirement. The event program will include celebratory video messages from international PH-organization leaders;
- A legislative briefing and lunch on Capitol Hill (bringing U.S. Senate and House of Representatives staffs together for lunch and programming to discuss PH-specific legislation and teach them a little more about the disease); and
- A World PH Day photo album to be posted on Facebook representing activities from PH-serving organizations around the world.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families and medical professionals. Among its programs, PHA facilitates more than 245 support groups around the country and delivers continuing education for medical professionals through PHA Online University. For 12 consecutive years, PHA has received the highest rating — four stars — for fiscal accountability and transparency from Charity Navigator, placing it in the top half of 1 percent of all rated charities. For more information, please go to www.PHAssociation.org, @PHAssociation on Twitter or www.facebook.com/PulmonaryHypertensionAssociation.
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