Pulmonary Hypertension Community Has Much to Celebrate on Rare Disease Day

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On Rare Disease Day, February 28, the Pulmonary Hypertension Association and PH community will celebrate the approval of three new PH treatments since October 2013 and join the National Organization of Rare Disorders in spreading the word that more needs to be done for the nearly one in ten Americans living with a rare disease.

Our collective strength is 30 million of our family, friends and neighbors living with rare diseases. As our healthcare system places new challenges on research and treatment, the sleeping giant that is the rare disease community is ready to wake.

On Rare Disease Day, February 28, the pulmonary hypertension (PH) community will celebrate the approval of three new PH treatments since October 2013 and join the National Organization of Rare Disorders in spreading the word that more needs to be done for the nearly one in ten Americans living with a rare disease.

“Everyone knows someone with a rare disease,” said Peter L. Saltonstall, president and CEO of NORD. “Rare Disease Day is a time to show support for the 30 million Americans – and millions more around the world – living with rare diseases.”

Approximately 7,000 rare diseases have been identified but only 400 treatments are available, addressing approximately 250 of the conditions. Pulmonary arterial hypertension, with 12 treatments, is a rarity.

“Rare Disease Day reminds us that we are not alone,” said Rino Aldrighetti, president and CEO of the Pulmonary Hypertension Association. “Our collective strength is 30 million of our family, friends and neighbors living with rare diseases. As our healthcare system places new challenges on research and treatment, the sleeping giant that is the rare disease community is ready to wake.”

Two-thirds of those affected by rare diseases are children, and the diseases tend to be serious and lifelong. On Rare Disease Day, patient organizations around the world unite to promote awareness of the challenges, hopes and needs of those living with rare diseases. Rare Disease Day was launched in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. It is now observed in more than 65 nations, and is sponsored in the U.S. by NORD.

For more information about Rare Disease Day activities in the U.S., go to http://www.rarediseaseday.us. For more on the sleeping giant that is the rare disease community see http://www.PHAssociation.org/RinoBlog.

About the Pulmonary Hypertension Association
PHA, headquartered in Silver Spring, Md., is the country's leading pulmonary hypertension organization. PHA is unique in its approach of connecting the entire PH community of 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, research, advocacy and awareness. PHA provides free access to information on its website about pulmonary hypertension, facilitates over 240 support groups around the nation, and delivers continuing education for medical professionals. To learn more about PHA, visit: http://www.PHAssociation.org

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Katie Kroner
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