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Scleroderma Foundation
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eLetter #821 | July 5, 2019  

Dr. Richard Burt

Richard Burt, M.D.


Hematopoietic Stem Cell Transplantation for Systemic Sclerosis
Richard Burt, M.D.
National Patient Education Conference
July 19-21, 2019, Chicago

Richard Burt, M.D., Feinberg School of Medicine, Northwestern University, will touch on various topics pertaining to stem cell transplantation procedures for individuals with scleroderma.  Learn about the most current information on this treatment option by attending the Scleroderma Foundation's National Patient Education Conference in Chiago, July 19-21.

REGISTER TODAY

Suzanne Li

Suzanne Li, M.D., Ph.D.


Pediatric Scleroderma: What Is It! Where Do We Go From Here?
Kids Get Scleroderma, Too! Program
at National Patient Education Conference

Suzanne Li, M.D., Ph.D., Hackensack Meridian Health, helps parents and caregivers better understand what pediatric scleroderma is and how it can be managed, and how parents and caregivers can advoate for their children. 

This workshop is offered within the Kids Get Scleroderma, Too! (KGS2) program at the Scleroderma Foundation's National Patient Education Conference in ChicagoJuly 19-21, 2019.

REGISTER TODAY

Advocacy Advocate Legislator Visit


Call to Action on HR3446

On Monday, June 24, 2019, Representative Peter T. King (R-NY-2) introduced H.R. 3446, the National Commission on Scleroderma and Fibrotic Diseases Act. If passed into law, this bipartisan, budget-neutral bill would establish a commission to improve coordination of NIH-support research related to scleroderma and other fibrotic diseases.

Sign and return the advocacy letter asking your member of Congress to cosponsor our bill! All advocacy letters are hand-delivered to members’ office on Capitol Hill.  Make your voice heard!

DOWNLOAD THE LETTER TODAY

NORD logo stacked


Self-Advocacy and Care Coordination
Webinar: July 24, 2019; 2 p.m. Eastern

Join us for an upcoming NORD (National Organizaiton for Rare Disorders) webinar on self-advocacy and care coordination.  Presenting will be Laran Hyder, Director of Education and Outreach at the Neuroendocrine Tumor Research Foundation (NETRF), and Jill Pollander, Director of Patient Services at NORD.

REGISTER TODAY

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Interstitial Lund Disease Treatment Webinar

Watch the recording of the June 27 webinar, Treatment for Scleroderma Interstitial Lung Disease, hosted by the American Thoracic Society.

WATCH THE RECORDING

New England Journal of Medicine


Article on Nintedanib Phase III Trial 

In an article published by the New England Journal of Medicine (June 2019), doctors who conducted the SENSCIS™ trial (Safety and Efficacy of Nintedanib in Systemic SClerosIS) reported their postive findings from Phase III.  The article's conclusion stated, "Among patients with ILD associated with systemic sclerosis, teh annual rate of declien in FGVC was lower with nintedanib than with placed."

READ THE ARTICLE

2019 Stepping Out Denver Woman More than Scleroderma


Why Do You Step Out to Cure Scleroderma?

Stepping Out to Cure Scleroderma is a fundraising event that brings together family and friends of those who have scleroderma. The monies raised by individuals and teams are used to advance the Scleroderma Foundation's three-fold mission of support, education, and research.

If online registration is closed, please sign up in person at the walk site on the day of the event.

July 27: Columbus OH

July 28: St. Paul MN

August 3: Dayton OH

August 4: Aurora IL

August 10: Cleveland OH, York PA

August 17: San Diego CA

August 18: Germantown WI

Find more walks at scleroderma.org/steppingout

 
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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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