FOR IMMEDIATE RELEASE

Contact: Hillarie Turner, 202-296-2002 x113, hbt@ecius.net

Rare but Equal, Pulmonary Hypertension and Other Unknown Diseases Impact Lives Worldwide

Silver Spring, Md. (Feb. 24, 2011) — Pulmonary hypertension (PH) is a rare, under-diagnosed disease that can strike people at any time, affecting newborns to the elderly or anyone in between. To raise global awareness of this invisible disease, the Pulmonary Hypertension Association (PHA) is partnering with the National Organization for Rare Disorders (NORD) and Rare Diseases Europe (EURORDIS) on Feb. 28, 2011, to observe Rare Disease Day.

PH is caused by high blood pressure in the arteries of the lungs that can lead to heart failure, and is often misdiagnosed as asthma, congestive heart disease or chronic bronchitis.

“Each of the 7,000 known rare diseases impacts fewer than 200,000 people in the U.S., but collectively they affect more than 25 million Americans,” said Rino Aldrighetti, president and CEO of PHA. Aldrighetti continued, “If more people were aware of rare diseases such as PH, we would have more treatments, effective diagnosis and patients would live longer. PHA is proud to join with NORD and EURORDIS to bring awareness to those living with rare and under-diagnosed diseases during Rare Disease Day 2011.”

PH has no cure and without treatment it can be deadly. While PH is one of only 200 rare diseases with treatment options, research shows that lack of awareness plays a major role in delaying its correct diagnosis, which takes an average of over a year.

Patients, caregivers and volunteers around the world are raising awareness of PH and other rare diseases through programs like the PuckerUp4PH campaign. PuckerUp4PH was a global effort that recently broke the Guinness World Record for the largest amount of blue lip prints. Blue lips, or cyanosis, can be a sign that a person has PH among other conditions.

Pulmonary hypertension is a life-challenging illness, but with certain lifestyle changes many patients continue to lead active and fulfilling lives. Fifteen years ago PH patients had a 50-percent chance of surviving 2.8 years past diagnosis, but with new treatment options and the care of a PH specialist, more patients are living longer.

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NOTES TO EDITORS: PH patients and physician experts are available to discuss PH and Rare Disease Day.

PHA is on Facebook, Twitter (#PHAwarenessMonth) and YouTube.

About The Pulmonary Hypertension Association (PHA)
Headquartered in Silver Spring, Md., PHA is the country’s leading organization connecting pulmonary hypertension patients, families, and medical professionals. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, advocacy and awareness. PHA provides free access to information on its Web site about pulmonary hypertension and facilitates over 200 support groups around the nation, helping many of the estimated 30,000 diagnosed patients in the U.S. To learn more, visit: http://www.phassociation.org/

 

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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.