July 11, 2012 >> back to issue

This August Tell Congress How They Can Help Improve Early Diagnosis!

“I met a patient from Vermont who had never connected with another patient. She had been isolated from the time of her diagnosis, which was about two years ago.”

- Jeannette Morrill, PH patient and advocate explaining why she educates her Members of Congress about the Tom Lantos Pulmonary Hypertension Research and Education Act (HR1810, S775).

Nicole CooperSuccess! Nicole Cooper used
PHA’s step-by-step District Visit
guide and email template to
schedule her district visit with
Rep. John Sarbanes (D-MD)
this August.

On average, it takes PH patients two years before they are diagnosed with pulmonary hypertension. In that time, patients go without lifesaving medications and support from the PH community. The PH Research and Education Act (HR1810, S775) will fund education programs for medical professionals and the general public so that PH patients can be diagnosed earlier and receive the treatments and support critical to managing their disease. It also calls for increased NIH research on PH treatments.

This August, Members of Congress leave Washington, D.C., and head back to their local offices to meet with voters about the issues that matter to them. Take advantage of the opportunity to set up a meeting with your Congressional members, share your PH story and request co-sponsorship for the Tom Lantos Pulmonary Hypertension Research and Education Act (HR1810, S775).

PHA has the resources you need to schedule and prepare for your meetings:

Contact Elisabeth Williams, PHA's Grassroots Campaigns Manager, at 301-565-3004 x753 for more resources or answers to your questions to help you with your District Visits in August.

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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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.