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Scleroderma Foundation
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eLetter #753 | March 9, 2018  
conference scholarship

March 21 Deadline to Apply for a Scholarship to 2018 National Patient Education Conference

March 21 is the deadline for conference scholarship applications to arrive in the Foundation office. Scholarships are available for individuals with scleroderma.

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Are You Going to Philly?

REGISTER ONLINE for the 2018 National Patient Education Conference, July 27-29, in Philadelphia:

If you prefer to mail your registration,
download a PDF registration form and send in a hard copy.

Hotel information is also online.  To receive the group room rate of $169, call Loews Philadelphia Hotel, (888) 575-6397, and mention the Scleroderma Foundation conference, or click here to book your room via Loews' online system.

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Support Groups: New England

Support groups enable individuals with scleroderma to connect, it gives them a chance to meet and exchange information with others who face similar problems.  Groups also host expert speakers from time to time.

There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented. Each week, we highlight support groups associated with a particular chapter.  The New England Chapter (Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont) hosts ten groups.

Support Groups in Me, Ma, N.H., R.I., & Vt.

Michigan March 2018 Webinar 

& How it Affects Our Children
Webinar, March 14, 7-9 p.m. Eastern

Dustin Fleck, M.D., Pediatric Rheumatologist from Michigan Medicine will be leading this webinar for parents of juvenile scleroderma patients and providing educational information about the disease, medications and current treatments.  

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Grassroots Advocacy Webinar
March 26, 2 p.m. Eastern

Join our monthly grassroots advocacy training webinar.   


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Tweet @scleroderma

Do you have a Twitter handle?  Follow us @scleroderma.  Be part of our social media network and find a world of connections.

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The Healthline & NORD
"Stronger Scholarship"

Healthline, a consumer health information website, and NORD, the National Organization for Rare Disorders, team up to offer four scholarships of $5,000 each to assist and empower college students who are making an impact on rare and/or chronic diseases through research, patient advocacy, raising awareness, or community building. Application period is March 1 - May 1, 2018.

Read about Elibigibility and How to Apply

 Stepping Out Personal Page

Get Personal on Your Page

Telling your story of scleroderma on your Stepping Out to Cure Scleroderma personal page is a great way to motivate your donors. Your might think folks know your story, but they might not understand your experience.  Share how you feel about your scleroderma journey.  Whether it's you or a loved one who is coping with this disabling disease, it's up to you to help people understand the impact on your life.
Not signed up for Stepping Out to Cure Scleroderma?  You can fix that!  Register today!
Clinical Trial Update

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IND Application for Scleroderma Drug Greenlighted by FDA

Rare Disease Report published a story on March 6, 2018, regarding allowance granted by the U.S.F.D.A. to a gene therapy, in response to an Investigational New Drug (IND) application from by Fibrocell Science, Inc.

Read the complete story

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If you have scleroderma and PAH (pulmonary arterial hypertension), please visit to learn more about a research study evaluating a once daily oral drug

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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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