ANN STEFFENS SCLERODERMA RESEARCH FOUNDATION INC
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Mission Statement
We are a small not for profit research group with a mission to support and promote research toward treatment and cure of Scleroderma, Degos Disease, and other related disorders. We promote awareness and understanding of these disorders, especially among health-care professionals and encourage collaborative efforts, nationally and internationally.
About This Cause
This is your chance to be a real part of a not for profit research organization making a IMPACT in the lives of people living with rare disease. Steffens Research Foundation - A Rare Disease organization for Scleroderma and Degos Disease Scleroderma is less well known than many other rare diseases. In its systemic form, it obliterates small blood vessels; hardens of internal organs; and causes autoimmune dysfunction. From individual to individual, the disease will vary in extent and pattern of involvement and rate of progression. This variable course combined with lack of awareness contributes to delayed diagnosis and delayed onset of therapy. Degos Disease (or Malignant Atrophic Papulosis) shares some common characteristics with Scleroderma. Its systemic variant was previously rapidly fatal. Very recently, our group has pioneered and have had some success with a combination drug regimen. Although the mechanism of action is not well understood, people are living and remain less catastrophically affected under current treatment. In both cases, there have been some recent advancements, however aspects remain which are still poorly understood and less satisfactorily addressed. Our mission is to improve not only awareness and recognition among health care professionals, but also to contribute to advances in understanding the disease and in developing new therapies. Much has been accomplished, much needs to be done! As a Foundation, we pause to recognize sources of emerging hope within our organization. As of today, we are delighted to be an official 501 C 3 organization complete with an independent oversight board, medical advisors and bylaws. We contribute to the research community through publication in scholarly journals, present at national meetings and participate in rigorous research protocols. We support the cross discipline education of students in a wide variety of professional health schools (medicine, pharmacy physical rehab, nutrition, etc) and are active in web-based patient forums.