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eLetter #798 | January 25, 2019  

Digestive System Involvement Brochure

Digestive System Involvement in Scleroderma

An updated medical report (January 2019) on digestive system involvement in scleroderma has been posted on the Scleroderma Foundation website.  The report is written by Dinesh Khanna, M.D., M.S., professor of medicine and director of the University of Michigan Scleroderma Program.

Visit the "Brochure Download" page of the National Office website to access the PDF.

brochure download

Christina Loccke Claudette Johnson

Virtual Support Group: 
Parents of Children with Scleroderma

Zoom Meeting:  February 6, 2019; 7:30 p.m.

Topic: "My child's not different, scleroderma is." 

Discuss helping your child adjust to the changes that a chronic illness can cause.  

register to attend
meeting ID: 123-128-151

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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 healthcare team can improve your health.  

webinar link

2019 National Conference Chicago SF logo

Save the Date

National Patient Education Conference
July 19-20-21

Join us in Chicago, Illinois, for the 2019 National Patient Education Conference. 

Visit for details.

Sign up for conference e-Alerts to be notified when scholarship applications and registration are open.

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Research & Treatment Centers

Northwell Health, Rheumatology

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.

There are four scleroderma research and treatment centers in New York State.  In the city of Great Neck, visit the Northwell Health Division of Rheumatology.

livebetter with pulmonary rehab

Pulmonary Rehabilitation

Over one-third of people with a chronic pulmonary disorder, such as COPD, have avoided playing with children or grandchildren due to breathing problems.

Live Better with Pulmonary Rehabilitation is a pilot project of the American Thoracic Society (ATS) and the Gawlicki Family Foundation to increase public awareness of pulmonary rehabilitation.

Visit to find a pulmonary rehab program near you and improve your quality of life.

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An Ear for the Unsaid: The Importance of Hearing What is Not Said by Patients

by Monica St. Claire

Mayo Clinic Social Media Network and are collaborating an exciting new online community, that is "a professional social network for people and organizations using online digital communication tools to enhance health care delivery and advance careers."  

read more 

Reach for the Cure Faces Square

Reach for the Cure

As deeply as we believe in the promise of medical science, no one who has scleroderma can afford to wait.

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.


The Scleroderma Foundation seeks to expand its National Board membership
among those who are actively involved at the local level and have expertise in accounting/finance, development/fundraising, human resources, non-profit board leadership or general business. Retired and non-practicing health care
professionals will also be considered.  The deadline is March 22, 2019.  To
suggest a candidate for consideration, complete the online form:


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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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