FOR IMMEDIATE RELEASE

Renée W. Hockaday
PHA Communications
ReneeH@PHAssociation.org
240-485-0774 ph.

Tom Lantos Innovation in Community Service Awards Given by Pulmonary Hypertension Association to Advance Awareness of Rare Lung Disease

Silver Spring, Md. (July 16, 2014) – The Pulmonary Hypertension Association (PHA) has awarded 13 committed community activists funding for projects to raise awareness of pulmonary hypertension (PH) - a rare, debilitating disease of the lungs that affects the functioning of the heart and can lead to right heart failure. Without treatment, mean survivability is only 2.8 years.

Known as the Tom Lantos Innovation in Community Service Awards, the grants were established to create opportunities for those in the PH community to try out new ideas that can help advance research and awareness of PH. While there is not yet a cure, PH now has 12 FDA-approved treatments, all since 1996; 11 of those since 2001; three since October of 2013. That's more than all but two of the 7,000 rare diseases identified in the U.S.

"At PHA, we believe those whose lives are touched by this terrible disease deserve a chance to fight back. That belief has helped to create a community of strong and passionate advocates to advance the cause of finding a cure for pulmonary hypertension," said PHA President and CEO, Rino Aldrighetti. "This award was named after one of the heroes of the PH community and it is only fitting that his legacy creates more heroes on behalf of this cause."

Lantos Award winners include a Be Brave  awareness video, a project producing public service announcements about PH distributed to TV and radio stations across the country and a project to hold a joint education retreat for pediatric patients and families with medical providers to increase the connection among those groups in Spain. A list of all the 2014 Lantos Award winners can be found here.

This program is supported by an unrestricted grant from Gilead Sciences. Thirteen grants were awarded this year, each funded to a maximum of $5,000. Applications were reviewed by an independent committee of PHA community members and community leaders. To learn more about pulmonary hypertension and to get involved to help find a cure, go to www.PHAssociation.org.

About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., PHA is the country's leading pulmonary hypertension organization. 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 does this by connecting and working together with the entire PH community of patients, families and medical professionals. PHA facilitates more than 245 support groups around the country and delivers continuing education for medical professionals. To learn more about pulmonary hypertension and PHA, visit: 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.