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Scleroderma Foundation
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eLetter #681 | October 21, 2016  

Patient to Patient Experience Symposium 2016

patient-to-patient-experience-symposium-logo-web.jpgThe Patient to Patient Experience Symposium will empower, change attitudes and behaviors of patients, providers and public health professionals on the application and integration of evidence-based integrative approaches in management of rare autoimmune conditions.  This symposium is unique in that it’s organized by Patients for Patients and their providers.  The 2016 Symposium will be held at the Terranea Resort in Palos Verdes, California from November 18-20.

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Last Chance to Register for the Kids Get Scleroderma Too! Patient Education Forum

kids at conferenceJoin the Scleroderma Foundation Tri-State Chapter on October 28-29th for an educational and social event for patients and families.  Scleroderma doesn't limit itself to adults, many children are also affected by this autoimmune disease. Events include a Halloween Costume Party and educational workshops for adults, young patients and siblings.  This fantastic event will be held at the Hackensack University Medical Center in Hackensack, New Jersey.

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Video: Fibrosis - The Ugly Side of Collagen

eletter1019.jpgWe are happy to announce that select videos from the 2016 National Conference are now available online.  In this session, Carol A. Feghali-Bostwick, Ph.D., describes features of abnormal collagen deposition in the fibrosis that is hallmark of scleroderma. She also covers studies to identify the underlying cause of fibrosis and potential approaches to improve it. Feghali-Bostwick services on the National Board of Directors as the Vice Chair for the Scleroderma Foundation.  This video and more can be found on our YouTube channel.  We will continue to post more videos as them become available.

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How Autoimmune Disease Runs in the Family

Autoimmune_A7_Web.jpgThere’s a strong genetic link when it comes to autoimmune diseases. But to find out if you have one in your family, you have to ask the right questions.  It can sometimes take three or four years, and just as many doctors, to diagnose an autoimmune disease. Often symptoms are vague, like soreness, swelling and fatigue, and doctors may explain these away as solutions. This makes looking into your family history even more important.

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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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