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Scleroderma Foundation
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eLetter #846 | January 3, 2020  

2020 Conference Seattle Save the Date

Save the Date:
July 17-19, 2020

The National Patient Education Conference takes place July 17-18-19, 2020, in Bellevue, Washington, on Seattle's Eastside.

To be notified when scholarship applications and general registration open, sign up for the Conference e-Alert.


Scleroderma Voice Winter 2019 Cover

Is Your Email Address Current?

Email is a highly cost-efficient way for the Scleroderma Foundation to communicate with its members.  If you don't have an email address on file with the Foundation, or if you recently changed your email address, please contact with your current email address.

Learn about the Foundation's privacy policy and how we protect your personal information, for example: we never give, sell, or rent our mailing lists.  


library resources

Resource Organizations

Scleroderma affects many aspects of a person's life.  No one organization or governmental agency can fully address every issue the disease creates.  Googling can produce curious results that can't always be trusted.  To help individuals and families affected by scleroderma navigate the community of organizations that can make a difference in their lives, the Scleroderma Foundation compiled a list of government, research, and other associations, foundations, and societies.  These are organizations known to the Scleroderma Foundation to be reliable and to have expertise in their field of operation.


Advocacy Capitol Hill 2018 Gietzen

Amy Gietzen
Capitol Hill Day 2018

National Commission on Scleroderma and Fibrotic Diseases Act of 2019

Learn about the National Commission on Scleroderma and Fibrotic Diseases Act of 2019, it's a bipartisan and budget-neutral bill that, if enacted into law, will coordinate research related to scleroderma and other fibrotic diseases--research already funded by the National Institutes of Health.  The bill exists in both the House (H.R. 3446) and the Senate (S. 2477).

Go to to read the bill and to find letters to your U.S. Representative and Senators asking them to become a cosponsor.  It's easy. Print, sign, scan, and email the letters back to the Foundation, Or, mail them to Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA  01923. All letters are hand-delivered to Capitol Hill.


Clinical Trial Opportunities

Clinical Trials mapYou can track clinical trials for scleroderma, systemic sclerosis (SSc), pulmonary hypertension, and more at This robust website is published and maintained by the National Institutes of Health, U.S. National Library of Medicine. Search options include trials that are recruiting, country, state, and more. States highlighted in red in the map (left) have the most scleroderma-related trials. This concentration in specific states is solely the result of the geographic location of the institutions that focus on scleroderma research.

You can also find information about scleroderma-related clinical trials on, where designated "Scleroderma Research and Treatment Centers" list the trials taking place in their institutions.


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Diamond National Sponsor

Actelion Plain


Platinum National Sponsor

Boehringer Ingelheim Plain


Corporate Sponsors
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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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