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eLetter #766 | June 8, 2018  
2018 Hard Word Pledge Thunderclap  

June is Scleroderma Awareness Month

Join the movement this June as we raise awareness for scleroderma. Start by taking the pledge and telling a friend. Then, sign up to participate in the Thunderclap. 

HardWord.org

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:

How do we Find Better Treatments?
Lee Shapiro, M.D.

Sleep and Chronic Disease
Sarah Abbott, M.D., Ph.D.

Have you registered yet?  
scleroderma.org/conference.

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 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.

niams.jpeg
 

Integrating the Patient's Voice

Read this insightful letter from Theresa Mullin, Ph.D., the Associate Director for Strategic Initiatives at the FDA's Center for Drug Evaluation and Research (CDER). Dr. Mullin leads the Patient-Focused Drug Development (PFDD) initiative, which includes work related to the FDA Reauthorization Act (FDARA) and implementation of the 21st Century Cures Act. She also oversees CDER’s International Program.

PFDD is an area of work that the Scleroderma Foundation is actively engaged in through our Patients as Partners program.

read more

Join Inspire!
 

"What's the Story of Your Rare Disease Diagnosis?"

It seems that for every diagnosis of scleroderma there's a different story of how it came about.  At the same time, there are many similarities.  In the scleroderma community at Inspire.com, you can share the story of your diagnosis with others who also have stories to tell.  Some of those folks might be going through the diagnosis process right now and could use your insights.

join the scelorderma online community

Stepping Out Logo 2018 Be Part of the Cure
 

Why do you Walk?

Perhaps you have a loved on who has scleroderma.  Perhaps you have scleroderma.  Whatever your reason, participating in Stepping Out to Cure Scleroderma walk or 5K run is a great way to show your support and to raise money for support, education, and research.  

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

Southeast Florida Chapter Logo JPG  

Support Groups of Southeast Florida

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 Southeast Florida Chapter hosts three support groups.

Southeast Florida 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
Bayer Logo 2018 JPG


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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