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Scleroderma Foundation
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eLetter #764 | May 25, 2018  
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Conference Workshop Preview

TAmong the informative workshops offered at the 2018 National Patient Education Conference (7/27-29) in Philadelphia are the following:

Research Progress: New Directions
John Varga, M.D.

Renal Crisis
John Varga, M.D.

Early Bird Registration closes 5/30/18.
Have you registered yet?

youth conference 2017 drawings  

Kids & Teens at National Conference

The Kids & Teens program at the National Patient Education Conference is an exceptional experience for youth ages 6 to 17, who have scleroderma, or have a parent with scleroderma.  Siblings and parents or caregivers benefit, too.  The weekend is filled with fun learning and activities specific to their needs. 

Early Bird Registration closes 5/30/18.
Have you registered yet?

Discover Understand Overcome

Inviting Research Grant Applications

New Investigators and Established Investigators are invited to submit research grant applications to the Scleroderma Foundation's Peer Review Grant Program.  Applications and information is available on the Foundation website.

myPHteam stickman

Do You Have Scleroderma and PH?

Do you have scleroderma and pulmonaryhypertension?  On myPHteam you don't have to hide your real true feelings and struggles with scleroderma and PH.  

join to connect and be 'real' with people who know

Stepping Out Logo 2018 Be Part of the Cure

How Many Miles Does it Take to Cure Scleroderma?

Stepping Out to Cure Scleroderma walks are only a few miles.  There are 60 Stepping Out walks each year, and last year 8,271 people registered to that's at least 1,488,780 miles.  But it's not enough!  We can't stop Stepping Out until we Cure Scleroderma!   

be part of the cure, sign up to walk today!

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Support Groups of Oregon

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 Oregon Chapter hosts two support groups.

Oregon support groups

PAH in SSc Med-IQ CME Online  

Free Online CME Course: "Increasing Physician Awareness of PAH in SSc"

The Scleroderma Foundation is pleased partner with Med-IQ to present a free online CME publication that discusses guideline recommendations for pulmonary arterial hypertension (PAH) screening in patients with systemic sclerosis (SSc).  The article presents key insights on available treatment options for PAH.  In addition, it is enhanced with audio clips from an expert roundtable discussion on the increased risk of PAH in SSc, signs and symptoms that should prompt further evaluation for PAH, and the importance of communication among the multidisciplinary team.

This 30-minute CME course expires July 13, 2018,
so click on the link below to get started.
(Online CME Course: Increasing Physician Awareness of PAH in SSc)

Questions? Call (toll-free) (866) 858-7434, e-mail, or visit

Hard Word 2017 Add Your Voice  

June is Scleroderma Awareness Month

The Scleroderma Foundation will again partner with the Scleroderma Research Foundation and Scleroderma Canada for our Hard Word, Harder Disease awareness campaign during the month of June.  A "tool kit" will be available for you to share messages on Facebook and Twitter and other social media platforms.

Fatigue Trial U Mexico

Seeking Young Adults with an Autoimmune Rheumatic Condition for Research Study on Fatigue

Researchers from the University of New Mexico (UNM) are seeking participants for a study on how fatigue affects life in young adults with autoimmune rheumatic conditions, such as rheumatoid arthritis, lupus, scleroderma, psoriatic arthritis, and ankylosing spondylitis. To be included, participants must be between 18-30 years old, have fatigue, cannot be pregnant, and communicate in English. The study involves completing a packet of questionnaires about fatigue and daily life and participating in a phone interview.  This study was approved by the UNM Human Research Review Committee (Version 2 - HRPO#18-198). 

Contact Janet Poole Ph.D., O.T.R./L.,, (505) 272-8276, or Kristine Carandang, O.T.R./L.,, (626) 722-8761

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Actelion JSN 2018

Platinum National Sponsor

Boehringer Ingelheim

Gold National Sponsor
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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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