PHA on the Road Attendees Send 1,100 Letters to Congress

writing letters to CongressPHA on the Road brings together a cross section of the PH community, each with a personal connection to the disease. This year, at each of four PHA on the Road forums, attendees wrote letters to their Members of Congress educating them about pulmonary hypertension and requesting co-sponsorship of the Tom Lantos PH Research and Education Act. When PHA gathered all the letters to deliver them to Capitol Hill, we had more than 1,100!

In one of those letters, a nurse practitioner talked about her patients: "I see their struggles and their fights with this chronic and terminal illness. ... We can make a difference by funding research opportunities." The PH journeys of patients, caregivers, loved ones and medical professionals may be different, but together they paint a powerful picture of how this rare disease affects thousands of people.

 

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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.