The 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.
Last Chance to Register for the Kids Get Scleroderma Too! Patient Education Forum
Join 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.
We 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.
There’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.
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.
The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status. The foundation’s federal tax identification number is 52-1375827. Our primary goal is to raise funds for our three-fold mission of support, education and research. The foundation has 20 active chapters and 160 support groups across the country.