To mark World PH Day on May 5, the Pulmonary Hypertension Association (PHA) will join with 80 other groups worldwide in celebrating the progress made in their common fight against pulmonary hypertension, an often-misdiagnosed and life-threatening lung 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,” Rino Aldrighetti, the PHA’s president and chief executive officer, said in a press release. “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.”
In the U.S., the organization is planning a number of events commemorating the 2016 World PH Day, including:
- The establishment of a new pulmonary hypertension (PH) research-supporting fund that honors the group’s president for his 17 years of service, ahead of his June 19 scheduled retirement. The launch of Rino Aldrighetti: Leading from the Heart Fund will take place in the Silver Spring, Maryland, and Washington, D.C., area, and include celebratory video messages from PH leaders worldwide. Contributions to the fund are now being accepted.
- A Capitol Hill legislative briefing and lunch, bringing members and staff of the U.S. Senate and House of Representatives together with experts to raise awareness about the disease and discuss PH-specific legislation.
- A World PH Day photo album that will be available on Facebook (WorldPHDay) and display activities of PH organizations across the world.
The PHA will also use the day to raise awareness about “Our PH Library,” an education and information resource jointly launched with PHA Europe in 2015.
This year, the PHA is celebrating its 25th anniversary, and readying to host its 2016 International PH Conference and Scientific Sessions. The event brings PH-serving organizations, patients and their families, caregivers, clinicians, donors, and researchers together to network and exchange ideas. This year’s event, in Dallas, Texas, takes place June 17–19, and 2,000 participants are expected to attend.
PH is marked by increasing pressure in the lungs’ blood vessels, and can lead to right heart failure. Symptoms often include shortness of breath, light-headedness, and fatigue, and the disease can frequently be mistaken with asthma.
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