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Scleroderma Foundation
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eLetter #777 | August 31, 2018  

CellCept Now Listed in Medicare Drug Database for Off-Label Use

As of July 30, 2018, DRUGDEX Information Systems--one of three officially recognized drug compendia--lists systemic sclerosis (SSc) as an off-label indication within the CellCept® (mycophenolate mofetil) monograph. This means SSc patients with Medicare Part D will now receive coverage for this important medication.  Private insurers are also more likely to follow suit.  

As many patients and providers know, because CellCept is not FDA-approved for use in SSc, a lengthy and often unsuccessful authorization process has been required before insurers would approve coverage.  For patients with Medicare Part D, CellCept has never been approved due to strict laws regarding off-label use.

This acheivement is thanks to Jessica Farrell, Pharm.D., of the Steffens Scleroderma Center and a member of the Scleroderma Foundation's Medical & Scientific Advisory Board, who compiled and submitted the application to the editorial team at DRUGDEX for review the off-label use of CellCept in SSc.

2018 Opening Keynote Video



Conference Videos:  Opening Keynote, "Back From the Future"

In the opening keynote presentation of the 2018 National Patient Education Conference, Carol Feghali-Bostwick, Ph.D., describes what has been accomplished in the scleroderma field over the past two decades and the lessons we have learned. She discusses advances that have been made and current efforts under way in basic and clinical research, and ends the session with vision and hopes for the future.

watch video  

2018 Outstanding Education Program Michigan

Outstanding Education Program Award to Michigan Chapter

The 2018 Outstanding Education Program Award was presented to the Michigan Chapter for really setting the bar high for quality.  Going above and beyond the basic requirement of all chapters to do a patient education program once a year, Michigan took the time to assess the needs of their patient population and really design programs that address those needs.  Their sense of the trends in the community led them to develop a webinar series with scleroderma experts that cover specific issues several times a year.  Because they are online, these webinars are available to anyone, including people beyond their chapter area.  And, they share the webinar information so as many as possible can participate.


Boston University Rheumatology


Research & Treatment Centers

Boston University 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 the Greater Boston area, go to the Boston University Scleroderma Center.  

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Submit a Video Sharing Your Perspectives on Rare Disease Advocacy

What does rare disease advocacy mean to you? Share your perspectives as part of NORD's (National Organization for Rare Disorders) new video campaign, "35 Years and Growing: Personal Stories from the New Era of Patient-Focused Advocacy."  What motivates you as an advocate?  What advice would you give to someone new to advocacy?  Share! 

September 19 submission deadline.

learn more & contribute your story to the campaign


Kids Get Scleroderma Too

October 26 & 27, Aurora, Colorado

The Rocky Mountain and Tri-State Chapters are excited to co-host “Kids Get Scleroderma Too” on October 26 and 27, 2018, at Children’s Hospital Colorado in Aurora, Colorado. This event is for youth and teens who have scleroderma, and their parents and siblings. Juvenile scleroderma experts from around the country will lead educational sessions and group discussions.  Friday night features a fun Halloween costume party for the whole family!  Scholarships are available.

register today:​

Join Inspire!

"Looking for Advice, First Time Posting"

"Donna324" says, "This forum has been such a wonderful source of information for me.  I have been receiving the daily messages for over a year now, but have never posted."  Donna could use some advice now as her disease is progressing.  

join the conversation at

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Stepping Out Walks in September

September is upon us and fall will soon follow, but you can hold onto the last of vestige of summer by attending a Stepping Out to Cure Scleroderma walk or 5K run in Illinois, Missouri, Massachusetts, or Washington State. 

9/08 - Springfield, IL & St. Louis, MO
9/09 - Topsfield, MA
9/15 - Seattle, WA
9/16 - Westfield, MA
9/22 - Dixon, IL
9/30 - Boston, MA

sign up to walk today!

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Now Accepting Scleroderma Research Grant Applications

DEADLINE:  September 17, 2018

The Scleroderma Foundation's peer-reviewed grant program offers two distinct funding opportunities designed to foster the development of innovative and high quality research in fields related to scleroderma.  These are the New Investigator Grant and the Established Investigator Grant.  To apply or to learn more, follow the link below, or call 800-722-4673.  

research grant applications

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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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