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Scleroderma Foundation More than Doubles Research Commitment

Important Updates on COVID Masks for People with Scleroderma

 

What is Scleroderma?

Scleroderma is a rare disease that affects connective tissue and the vascular system. Generally classified as an autoimmune rheumatic disease, an overproduction of collagen (fibrosis) hardens tissue and damages organs. Commonly affecting the skin (called localized), scleroderma also affects internal organs (systemic sclerosis) and can be life-threatening. Anyone can have scleroderma. No one knows what causes the disease, although there are many clues including genetic predisposition. There is no cure and no drugs that halt the progression of the disease or reverse it. The fibrosis at the center of scleroderma makes it prototypic for all other fibrotic diseases.

Who We Are

The Scleroderma Foundation’s threefold mission provides emotional support and disease education while funding innovative research to discover the cause, understand the mechanisms and overcome scleroderma forever. With historical roots from the 1970s and a nation-wide network of chapters, the Foundation’s signature National Scleroderma Conference provides access to expert information and is the centerpiece of the community. The Foundation’s Medical & Scientific Advisory Board is comprised of world-renowned scleroderma experts who guide the organization’s health-related policies. Its Peer-Review Research Program emphasizes scientific merit, and its novel Patients as Partners program promotes collaboration between pharmaceutical and biotech entities and people living with scleroderma in the design of clinical trials.

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eLetter

Visit the eLetter Archive to read the stories behind these headlines.  Submit your email address to receive the eLetter every week.

eLetter #927: July 23, 2021

  • FACEBOOK LIVE: Sunday Sitdown, July 25, 1 p.m. Eastern Time (12 p.m. CT, 11 a.m. MT, 10 a.m. PT)
  • ZOOM: The 20%: A Virtual Support Group for Males Living with Scleroderma, July 28, 2021; 7 p.m. - 8 p.m. Eastern Time
  • WEBINAR: Needs Accommodations for Work? July 28, 3 p.m. Eastern Time
  • ZOOM: Parents of Children with Scleroderma Support Group, August 4, 2021; 7:30 p.m. - 9 p.m. Eastern Time
  • VIRTUAL: Health Advocacy Summit, August 7 & 8; 11 a.m. - 5 p.m. Eastern Time
  • ZOOM: SYNC: Scleroderma Young Adults Needing Connection, Friday, August 13 at 7:00 p.m. Eastern Time
  • World Lung Day - September 25
  • VIRTUAL: 9th PeDRA Annual Conference, October 14-15
  • Para Información Sobre COVID-19
  • Important Updates Regarding Mask Wearing for Immunocompromised Individuals with SSc, Updated May 17, 2021
 

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