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eLetter #765 | June 1, 2018  
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June is Scleroderma Awareness Month

Scleroderma is a hard word to say.  It’s a much harder disease to live with.  One of the hardest things about scleroderma is that so few people are aware of the disease, researchers don’t get the resources they need. 

Go to HardWord.org and take the pledge to spread the word and speak up for scleroderma.

Virginia Steen M.D.
 

"Lung in Scleroderma" Webinar

JUNE 6, 11:30 A.M. ET

As part of Scleroderma Week at the American Thoracic Society (ATS) and in conjunction with Public Advisory Roundtable partner the Scleroderma Foundation, the ATS hosts a live webinar on Wednesday, June 6 at 11:30 a.m. Eastern, entitled "Lung in Scleroderma," and presented by Virginia Steen, M.D., of Georgetown University.

join the webinar

2018 Conference Save the Date 180x270  

Conference Workshop Preview

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

Pregnancy and Scleroderma
Scott Dexter, M.D.

Taking Care of Your Hands and Face:
The Importance of Stretches, Assistive Devices, and Protection

Janet Poole, Ph.D., O.T.R./L., S.W.C.

Have you registered yet?  
scleroderma.org/conference.

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Kids & Teens at National Conference

The Kids & Teens program at the National Patient Education Conference is an exceptional experience for youth ages 5 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. 

Have you registered yet?  
scleroderma.org/conference.

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What Everyone Affected by Rare Disease Should Know About the Orphan Drug Act

On June 12, 2 p.m. - 3 p.m. Eastern, join an educational webinar on the importance of the Orphan Drug Act, an overview of how a drug is developed, and common myths about the process. Led by Paul Melmeyer, director of federal policy for NORD (National Organization for Rare Disorders).

join the webinar

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Create an Emergency Kit

Here's a checklist to help you prepare an emergency kit with medications and medical supplies in the event you are displayed from home by a natural disaster like a hurricane or flooding, or for any other reason.  Developed for PH patients, it can apply to anyone with medical needs.

learn more

Stepping Out Logo 2018 Be Part of the Cure
 

29 Stepping Out Walks in June

During 8 days in June, 19 different states will host 29 Stepping Out to Cure Scleroderma walks/5K runs.  Be part of the cure and sign up to walk or run today.  If you missed the deadline to sign up online, you can show up that morning, make a donation, and walk!

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

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Support Groups of South Carolina

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 South Carolina Chapter hosts three support groups.

South Carolina 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 info@med-iq.com, or visit www.Med-IQ.com/a1034

STUDY PARTICIPATION OPPORTUNITY
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., jpoole@salud.unm.edu, (505) 272-8276, or Kristine Carandang, O.T.R./L., carandangkm@gmail.com, (626) 722-8761

 
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Diamond
National Sponsor
Actelion JSN 2018

Platinum National Sponsor

Boehringer Ingelheim


Gold National Sponsor
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Corporate Sponsors
Reata Corporate National Sponsor

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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