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Scleroderma Foundation
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eLetter #760 | April 27, 2018  
2018 Conference Save the Date 180x270  

Conference Workshops

Here's a look at two more workshops to be offered during the 2018 National Patient Education Conference in Philadelphia, July 27-29.  Both are presented by Tracy Frech, M.D., M.S.  

"Health Care Maintenance and Systemic Sclerosis: How can my Rheumatologist and Primary Care Physician Best Work Together?"

"Gastrointestinal Issues in Scleroderma"

Have you registered yet? 
scleroderma.org/conference.

 

Capitol Hill Day 2018 Steps  

Scleroderma Advocates Represent on Capitol Hill

On April 16, 40 scleroderma advocates from 23 states met with 30 U.S. Senators and 26 U.S. Representatives in Washington, D.C., to encourage passage of House Bill 4638: "National Commission on Scleroderma and Fibrotic Diseases Act of 2017."

"The experience was incredibly empowering. It served as a reminder that our elected officials came into office for the good of the people. Many of them want to be told how to help, and showing up at a congressional office helps guide their efforts."  ~ Christina Loccke (New Jersey)

learn about House Bill 4638

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Over-the-Counter Adrenal Supplements: More Than Meets the Eye

In this article from "Mayo Clinic Proceedings," Ryan T. Hurt, M.D., Ph.D., and Manpreet S. Mundi, M.D., discuss the increasing use of over-the-counter dietary supplements by patients to relieve symptoms of chronic illness and disease.  These products are largely unregulated and generally have little supporting data about their effectiveness.  

read the complete article

Michigan Webinar May 2018  

Webinar:  Tips for Daily Living for Persons with Scleroderma
May 17, 2018; 7 to 9 p.m. Eastern

Janet Poole, Ph.D., O.T.R./L., F.A.O.T.A., Director and Professor of the Occupational Therapy Graduate Program of the University of Mexico, will lead an educational webinar presenting daily living skills and hand and face exercises for individuals with scleroderma.  Learn tips on how make your life more manageable. Webinar includes an hour of open discussion.

attend the webinar

March Taylor 3  

Conference Scholarships Create Connections

Connecting with others affected by scleroderma at the Foundation's National Patient Education Conference can be the experience of a lifetime, especially for someone whose scleroderma is newly diagnosed.  Getting to Conference can be a challenge for many.  That's why the Foundation provides scholarships to 50 or more first-time attendees every year.  Help us send folks to Conference who need to be there.

Please give generously to conference scholarships

Stepping Out Logo 2018 Be Part of the Cure  

Stepping Out 2018

Be part of the cure!  It only takes three easy steps. 

  1. Register
  2. Fundraise
  3. Walk

Teams work!  Form a team with family, friends, and coworkers.  It makes fundraising more fun and builds morale at work, plus it creates awareness as you approach more people.  Every step you take moves us closer to a cure.  

register and start fundraising today

Greater Washington DC Chapter Logo JPG  

Support Groups of Greater Washington, D.C.

Support groups enable individuals with scleroderma to connect and exchange information with others who face similar problems. Groups also host expert speakers from time to time. There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented. Each week, we highlight support groups associated with a particular chapter. The Greater Washington D.C. Chapter hosts support groups in Northern Virginia and Maryland, in addition to a new virtual support group.

Greater Washington DC support groups

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myPHteam

Pulmonary Hypertension occurs in roughly 20 percent of scleroderma patients. Connect with others who are living with PH and who really understand what you’re feeling beneath the surface with myPHteam.

myPHteam

 
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Diamond
National Sponsor
Actelion JSN 2018


Platinum Conference Sponsor

Boehringer Ingelheim


Corporate Sponsors
Genentech


 
 

 

   

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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