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COVID-19 Information & Recommendations from the Medical & Scientific Advisory Board

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Stepping Out to Cure Scleroderma
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COVID-19 Information & Recommendations for People with Scleroderma

  • 1/4/20 Información Importante Traducida al Español Sobre COVID-19 y Esclerodermia Juvenil
  • 30/3/20 Español "COVID-2019 ("Coronavirus") Información y Recomendaciones del Comité de Asesoría Médica y Científica de la Fundación de la Esclerodermia


2020 National Patient Education Conference & Kids Get Scleroderma, Too!

  • To protect the health of individuals who have scleroderma, the Scleroderma Foundation has cancelled its 2020 National Patient Education Conference and Kids Get Scleroderma, Too! conference scheduled to take place July 17-19 in Bellevue, Washington.
  • Individuals who have scleroderma, particularly those who have systemic sclerosis, are immuno-compromised and have a heightened risk for the worst-case symptoms of the coronavirus (COVID-19).
  • This decision was taken after thorough review of information available through public health agencies, primarily the Centers for Disease Control & Prevention and the State of Washington Public Health Department.
  • In lieu of the eagerly anticipated in-person educational conference and the unique and essential personal connections it provides; the Scleroderma Foundation is developing creative, alternative programming to be announced later.
  • A full refund of conference fees will be given automatically the week of March 16-20 to all currently registered to attend.
  • Hotel room reservations must be cancelled independently.
  • We are pleased to announce that the conference will return to Bellevue, Washington in 2022. The location for the 2021 conference will be announced later this year.
  • Video recordings of presentations by scleroderma experts at past Foundation conferences can be found at

Thank you for your understanding.


Who We Are

The Scleroderma Foundation is a federally qualified 501(c)(3) nonprofit dedicated to serving the needs of the scleroderma community.  Our primary goal is to raise funds and awareness for our three-fold mission of support, education and research.  All donations are qualified charitable donations to the fullest extent of the law.  Our federal tax identification number is 52-1375827.  All donations are gratefully accepted. 

What is Scleroderma?

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease.


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

eLetter #871; June 26, 2020

  • June 29 is World Scleroderma Day
  • Sign Up for National Day of Action, June 29
  • Know the Face of Scleroderma, Lia Young, Diagnosed 2014
  • Patient Education Summer Series
  • SCORE Launched to Understand Biology of Pediatric Scleroderma
  • When Life Gives Your Nana Lemons...
  • Sunday Sitdown, Facebook Live: June 28, 1 p.m. Eastern
  • Keeping Our Promise
  • COVID 19 Information & Recommendations
  • myPHteam
  • Clinical Trial Opportunity
    • Belimumab and Rituximab Combination Therapy

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