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Scleroderma Foundation New England
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eLetter #800 | February 8, 2019  

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Conference Scholarship Applications

National Patient Education Conference
July 19-20-21, Chicago, Illinois

Scholarship applications are now being accepted to attend the 2019 National Patient Education Conference. The deadline to apply is March 20, 2019.

Scholarships are for first-time attendees who have scleroderma, including adults and children, and a parent/caregiver of minor children who have scleroderma.  Download an application today.

Visit for details.

Sign up for conference e-Alerts.

Stretching Hands and Face Poole Brochure

Stretching Exercises for the Hand and Face

An updated brochure (January 2019) that outlines stretching exercises for the hand and face has been posted on the Scleroderma Foundation website. Stretching can help prevent or slow down the loss of motion in the joints.  The information was prepared by Janet L. Poole, Ph.D., O.T.R./L., professor, Occupational Therapy Graduate Program, University of New Mexico. Visit the "Brochure Download" page to access the PDF.

brochure download

Stress Graphic

Stress Management Group

Webinar Series, Thursdays in February
2/14, 2/21, 2/28; 7-8 p.m. Mountain Time

The Rocky Mountain Chapter is hosting a four-week stress management skills training webinar series. Participants will learn how to manage stress using cognitive-behavioral strategies, relaxation, and effective coping strategies. 

The webinars will be co-facilitated by Alaina Carr, M.A., and Sydneyjane Roberts, M.A., both doctoral students in the University of Colorado Denver Clinical Psychology Program, under the supervision of Kristin Kilbourn, Ph.D., M.P.H.

You may join each session by computer, (enter your name and request to join) or by phone at (302) 202-5900 (enter conference ID 947-770-935).

needymeds logo.jpg

Becoming an Empowered Patient

Webinar:  February 13, 2019; 1:30 p.m. (ET)

Learn how advocating for yourself and being an active part of your own health care team can improve your health.  

webinar link

Rare Disease Day logo 2018 small

Rare Disease Day

"Bridging Health and Social Care"
Thursday, February 28

Rare Disease Day® takes place on the last day of February each year to raise awareness among the general public and policymakers about rare diseases and their impact on patients’ lives.

Visit the Rare Disease Day website to learn how you can spread the word through your social network online and in your community.

learn more

Penn Medicine Logo

Research & Treatment Centers

Penn Scleroderma Center

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a center, a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma.
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In Pennsylvania, there are four scleroderma research and treatment centers, including the Penn Scleroderma Center, which has three locations: Hospital of the University of Pennsylvania (Philadelphia), Penn Medicine Radnor (Radnor), and Penn Medicine Valley Forge (Berwyn).

livebetter with pulmonary rehab

Pulmonary Rehabilitation

Most patients with a chronic pulmonary disorder have heard of oxygen therapy and medicine-based interventions such as inhalers as treatments for their disease, but only 38% have heard of pulmonary rehabilitation -- a proven treatment that improves quality of life. Raising awareness is key to getting patients the treatment they need.

Learn more

John Varga M.D.
John Varga, M.D.

Reach for the Cure

“The Scleroderma Foundation has made grants…that have allowed young people to get over this initial critical phase in their career when they begin to think about what area to work in in terms of their research. And, having that, even small grant, that allows them to focus on scleroderma has made the difference,” John Varga, M.D., Northwestern University.

The need is great.  The time is now.  The choice is yours. Please give generously.

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition will be published online only.  By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission. 

Subscribers (Foundation members) will receive an email with a link to read the magazine online.

If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.

or call (800) 722-4673.


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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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