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Scleroderma Foundation
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eLetter #790 | November 30, 2018  

YouTube 2018 Sasso Newly Diagnosed


Video:  "Newly Diagnosed: Feeling Like a Deer in Headlights"

At the 2018 National Patient Education Conference, we filmed a presentation by Ron Sasso, M.S., L.P.C., Author, discussing the diagnosis experience.  The presentation explored ways to cope with the change, to be proactive, and to keep it in perspective. It also covered simple relaxation techniques to help manage stress and diminish feelings of being overwhelmed.

watch this video & others from the 2018 conference

ACA Open Enrollment

December 15 Deadline for 2019 Health Insurance Open Enrollment

If you need health insurance for 2019 via the individual marketplace of the Affordable Care Act, the open enrollment period ends December 15. Anyone who doesn't have coverage through a job, Medicare, Medicaid, the Children's Health Insurance Plan (CHIP), or other qualifying coverage is eligible to apply.

Visit to learn more and sign up

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NORD Webinar: "How to Make Your Insurance Work for You."

Thursday, December 20, 2 p.m. ET

Once you are signed up for your 2019 insurance plan, learn how to navigate it!

Join a webinar on how to make your insurance work for you. It will cover how insurance works, information on understanding the approval process, and tips on how to successfully reverse a denial.

This webinar is perfect for patients, caregivers and the public

register now


Research & Treatment Centers

Seattle Children's Hospital, Rheumatology Clinic

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 Washington, we are foturnate to have three scleroderma centers, including the Seattle Children's Hospital, Rheumatology Clinic.

Rheumatologist Jim Dowdalls Science Source

Scleroderma Autoantibodies Linked to Cancer Risk

The Rheumatologist magazine published an article discussing recent studies about the "relationship between scleroderma and autoantibodies and an increased cancer risk within a short interval of scleroderma onset."  Virginia Steen, M.D., professor of medicine at Georgetown University School of Medicine and Chair of the Scleroderma Foundation's Medical and Scientific Advisory Board, was quoted in an article written by Kurt Ullman.  

read more

IFFGD International Foundation for Gastrointestinal Disorder

International Foundation for Gastrointestinal Disorders

The International Foundation for Gastrointestinal Disorders, IFFGD, is a resource for reliable digestive health knowledge, support, and assistance about functional gastrointestinal (GI) and motility disorders (FGIMDs).  The organization has published an online summary of the impact scleroderma has on the GI tract. Included is information about GERD, gastroparesis, intestinal pseudo-obstruction, chronic constipation, and bowel incontinence.

read more

Join Inspire!

"Systemic Scleroderma and Heart Problems"

It seems that scleroderma is full of surprises.  You start out with one symptom and then something else comes up.  What's next?  Support groups are a great place to talk with other folks who live with scleroderma to learn how your experience compares to theirs.  Our online support community at offers that same connection with some 40,000 people.  Join the conversation.

share your story of scleroderma on Inspire

EOY 2018 Instagram Dani Steinwandt

"I Refuse to Let Scleroderm Get the Best of Me"

Diagnosed with linear scleroderma at the age of 10, Dani Steinwandt and her mother, Karen, have spent the last six years uncertain what the future will hold. A simple childhood was changed forever, but because of your donation, this mother and daughter team have had the resources they need to embrace the future.

Please give today to the Scleroderma Foundation. Together, we can create better tomorrows for those living with scleroderma.

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition (November) 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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Actelion JSN 2018

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United Therapeutics 2018 Bronze Conference Sponsor

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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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