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Scleroderma Foundation
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eLetter #755 | March 23, 2018  

NIH National Center for Complementary and Integrative Health

Relaxation Techniques for Health

The National Center for Complementary and Integrative Health offers a comprehensive look at relaxation techniques including the different methods and the science behind them. 

read more

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Grassroots Advocacy

Being an advocate for ongoing research funding doesn’t require a trip to Capitol Hill.  There are effective ways to advance our efforts toward finding a cure that you can do in your community.

To learn more, check out the five recorded grassroots advocacy webinars on the Advocate Resources page.

 2018 Conference Save the Date 180x270

Are You Going to Philly?

The National Patient Education Conference is a remarkable experience where people with scleroderma can connect with each other and learn from one another and from scleroderma experts.  

REGISTER ONLINE for the 2018 National Patient Education Conference, July 27-29, in Philadelphia:  scleroderma.org/conference.

If you prefer to mail your registration, download a PDF registration form and send in a hard copy

Hotel information is also online.  To receive the group room rate of $169, call Loews Philadelphia Hotel, (888) 575-6397, and mention the Scleroderma Foundation conference, or click here to book your room via Loews' online system.

KGS2 Kids Get Scleroderma Too October 2018

KGS2 - Kids Get Scleroderma Too!
Children's Hospital Colorado, October 26 & 27, 2018

SAVE THE DATE and join the email list to learn about scholarships and registration for this educational program about juvenile scleroderma held in Aurora, Colorado.  Co-sponsored by the Rocky Mountain and Tri-State chapters.  To join the email list, click one of the links below to send an email asking to be added.

Select a mailing list to join:
Rocky Mountain - Tri-State

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Support Groups of Minnesota

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 Minnesota Chapter hosts groups in Duluth, Edina, and Fridley.

If you are interested in being part of a new scleroderma support group in the Fargo-Moorhead area, please contact the chapter at MNChapter@scleroderma.org to express your interest.

Support groups in Minnesota

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Give the Opportunity of a Lifetime

At the age of ten, Taylor Brown's life changed forever when she was diagnosed with "en coup de sabre," an unusual form of linear scleroderma. Taylor's mother, TaMetress Reed, immediately searched online to learn how to help her daughter live a full life. She found the Scleroderma Foundation's National Patient Education Conference and applied for a scholarship to attend.

"The thing I liked the most about the youth program were the different activities we did that helped us express how we felt from actual pain," said Taylor.

"Since attending the conference I see a major improvement in Taylor's health because I learned what questions to ask," said TaMetress.

Donate today to fund a conference scholarship

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myPHteam

When you have pulmonary hypertension and scleroderma most people don't know how hard we work to appear 'fine.'  Connect with people you can be real with on myPHteam.

myPHteam

Drug Development 
 Boehringer Ingelheim

FDA Grants Fast Track to Nintedanib for Systemic Sclerosis and ILD

Boehringer Ingelheim announced on March 19, 2018, that the US Food & Drug Administration (FDA) granted "Fast Track" designation to their compound, "nintedanib," for the treatment of systemic sclerosis (SSc) associated with interstitial lung disease (ILD). 

Read the press release from Boehringer Ingelheim

 
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Diamond
National Sponsor
Actelion JSN 2018


 

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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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