Silver Spring, Md. (Jan. 12, 2016) – The Pulmonary Hypertension Association (PHA) celebrates its 25th anniversary by marking advances that give hope to people living with an often misdiagnosed deadly disease. With a renewed commitment to supporting the nation’s community of pulmonary hypertension (PH) patients, families, caregivers, medical professionals and scientists, PHA has put its heart into finding a cure.
PH, which some people call “the other high blood pressure,” is increased blood pressure in the blood vessels of the lungs that puts pressure on the right side of the heart and can lead to death from heart failure. With symptoms that include shortness of breath, fatigue and chest pain, too many people suffering from pulmonary hypertension (PH) lose valuable time as they are treated for other illnesses, such as asthma. Because patients go months, sometimes years, believing they have something other than PH, without treatment, the average length of survival in PAH can be only 2.8 years after diagnosis. The incurable life-threatening illness, which affects adults and children, can be associated with a number of diseases, among them, lupus, scleroderma, sickle cell anemia and HIV, or it can exist alone with no known cause.
The organization, founded by three PH patients and a caregiver as they met Jan. 12, 1991 around a kitchen table, has seen significant progress over the years in the treatment of PH. PHA is the first organization in the world dedicated to providing comprehensive PH patient and caregiver support, medical education, specialty care services that improve patients’ quality of life, and research to give hope to people battling the disease.
In 1991, there were no FDA-approved PH treatments. Today, there are 14, more than those approved for all but two of the 7,000 identified rare diseases. PHA has provided more than $17 million in PH research commitments, and more than two dozen Pulmonary Hypertension Care Centers (PHCCs) have completed PHA’s new accreditation process. In December 2015, PHA’s new PHCC Board of Directors, made up mostly of PHA Trustees, met for the first time. The centers will provide data for the new Pulmonary Hypertension Association Registry, a major advancement in PH care and research.
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 one percent of all rated charities. In November, to broaden public awareness about the disease, PHA launched “Heart2CurePH,” a national multi-media public service campaign with the tagline, “At PHA, we’re putting our heart into finding a cure.” The campaign includes radio and TV public service announcements, print ads, billboards, digital ads and public transit advertising.
The association expects nearly 2,000 attendees to help celebrate its 25th anniversary at the PHA International PH Conference and Scientific Sessions Conference June 17-19 in Dallas this summer.
“PHA, which serves as a model for more than 80 international PH organizations, represents a community of patients, caregivers, healthcare professionals and scientists who are guided by PHA’s mission,” said Rino Aldrighetti, PHA’s president and CEO. “In a little more than two decades, as a team of patients, caregivers, clinicians, researchers, fundraisers and volunteers, PHA has led the way for progress in the areas of patient care, public awareness and PH research.”
PHA is the central source for information about PH. Advances in Pulmonary Hypertension, The Official Journal of the Pulmonary Hypertension Association, reaches more than 40,000 cardiologists, pulmonologists and rheumatologists quarterly, with licensed editions in Spain and India. In addition, PHA distributes its Pathlight magazine to 10,000 patient/caregiver/medical professional members and supporters each quarter. In April 2015, the association launched myPHA, a social network that now engages more than 1,100 patients.
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 one percent of all rated charities. For more information, please go to www.PHAssociation.org, @PHAssociation on Twitter or www.facebook.com/PulmonaryHypertensionAssociation.