Recognizing World Scleroderma Day, June 29
Tell your representatives to become a co-sponsor of H.R. 1429.
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
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.
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.)
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!