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May 2009
Dear {NAME}, Why do infections sometimes trigger psoriasis? Why do treatments work for some people but not others? Why do treatments often work for only a limited time? The answers to these types of questions will help unlock the door to a cure and scientists can find those answers in part through setting up a patient registry. That's why we have set as a key goal in Washington, D.C., the initial funding of $1.5 million for the Centers for Disease Control & Prevention (CDC) to begin work on a registry for psoriasis and psoriatic arthritis patients. We need your help to ensure Congress realizes how urgent the need is for this initiative and to allocate the necessary funds to launch the registry. Learn more about the patient registry and how you can make a difference. Best regards,   Dan Farrington Chair, Advocacy Committee Board of Trustees 
Sheila Rittenberg Senior Director of Advocacy & External Affairs Psoriasis registry: Why it's important to my family Christine Morris with her daughters, Katelyn and Carly. The family traveled to Washington, D.C., for Capitol Hill Day in February. Both girls have psoriasis and psoriatic arthritis. When both my daughters began showing signs of psoriasis, we had no idea what to think. Not only did we not know anyone with the disease, but their symptoms were severe and doctors were hesitant to treat them with anything more than over-the-counter treatments. At the ages of 4 and 7, both girls began showing signs of psoriasis arthritis. As a mother, I want my daughters to have the best quality of life possible and I worry about the co-morbidities associated with psoriasis. By establishing a patient registry, researchers and doctors will be able to better understand how these diseases impact individuals over time, the various symptoms associated with them and how to best treat patients of all ages—including kids like Katelyn and Carly. Ask your members of Congress to make a difference!The Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act (H.R. 930/S. 571) has made significant headway since its reintroduction earlier this spring. Although we can count 53 House members and 9 Senators as supporters, we still need additional co-sponsors to ensure this critical legislation moves forward. Write to your elected officials today.Whether you attend a town hall meeting or set up an appointment, the Psoriasis Foundation is here to help. For additional information, contact action@psoriasis.org or 800.723.9166, ext. 407. Like what you read? Become a member of the National Psoriasis Foundation. Find out how. |
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