Advocates on Steps of Congress 2013
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Recognizing World Scleroderma Day, June 29

Tell your representatives to become a co-sponsor of H.R. 1429.

world scleroderma day.pngThe Scleroderma Foundation, along with our patient advocacy group partners around the world, will recognize Saturday, June 29, as World Scleroderma Day. Events and observances around the world will be held, and are designed to foster greater awareness and understanding of this little-known disease.

June has been observed as “Scleroderma Awareness Month” since the 1980s in the U.S. and several Canadian provinces, with proclamations issued from national, state and provincial governments. The first World Scleroderma Day was inaugurated in Europe on June 29, 2009. In February 2010, the first Systemic Sclerosis World Congress was held in Florence, Italy, where it was officially decided that June 29 would be recognized as World Scleroderma Day. Within the past three years, the day has grown to include observances in Australia, Brazil, Canada, Europe, India, the U.S., and many more countries.

“Awareness is at the core of our mission,” said Ann Tyrrell Kennedy, the president of Federation of European Scleroderma Associations, or FESCA. “By joining together on a global level, the collective voice of the scleroderma community can be heard more loudly and frequently, which can lead to greater interest in this disease.” (Read the full press release from the organizations.)

Yesterday, Rep. Lois Capps (D-CA) read a statement in the U.S. House of Representatives to recognize Scleroderma Awareness Month. “Given the unpredictable progression of the disease, scleroderma, like many other autoimmune diseases, is difficult for medical practitioners to accurately diagnose and even more difficult to treat as there are currently no disease specific treatments,” she said. “As we recognize the need for awareness of this troublesome disease, we can and must do more for the thousands of Americans who are diagnosed with this condition each year.”

Rep. Capps, along with Rep. Peter King (R-NY), is an original sponsor of H.R. 1429, the Scleroderma Research and Awareness Act. This bipartisan legislation would work to intensify the research into scleroderma by the National Institutes of Health. There currently are 11 co-sponsors of the bill. “I urge my colleagues to join us in support of this important legislation providing for needed federal investment in this misunderstood diseases,” said Capps. Also on Thursday, Sen. Kirsten Gillibrand (D-NY) introduced the Senate version of the legislation, S.1239.

Tell your representatives to become a co-sponsor of H.R. 1429. Take action now >>

We will provide you with a link next week to tell your Senators to become a co-sponsor of S.1239. Thank you!

 

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