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eLetter #770 | July 6, 2018  
2018 Conference Save the Date 180x270  

Conference Workshop Preview

It's not too late to attend the 2018 National Patient Education Conference in Philadelphia, July 27-29.  Among the educationals workshops is the following presentation:

"Exciting Data  from The American College of Rheumatology, the World Scleroderma Conference and the European League of Rheumatology: 2017-2018," Dan Furst, M.D.

Workshop titles (including the youth program) have been posted online in PDF form for download:  Friday, Saturday, Sunday, Youth Workshops.

Have you registered yet? scleroderma.org/conference

Kids Room Sunday Conference 2018  

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. 

The Youth Workshop Schedule has been posted online in PDF format for download.  

Have you registered yet?  
scleroderma.org/conference

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Scleroderma & Exercise Focus Group

If you're attending the Scleroderma Foundation's National Patient Education Conference in Philadelphia, Friday, July 27 and Saturday, July 28, please consider signing up for a 90-minute focus group on barriers and facilitators to physical activity.  The group is managed by the Scleroderma Patient-centered Intervention Network (SPIN) and is open to people who have been diagnosed with scleroderma.

Contact Marie-Eve Carrier, (800) 370-5099

University of Colorado Scleroderma Program
 

Research & Treatment Centers

University of Colorado Scleroderma Program

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a “center,” a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma. 
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In Colorado, the University of Colorado Scleroderma Program is located in Aurora.  

webinar Michigan addressing myths 2018
 

One on One with Dr. Maureen Mayes: Addressing the Scleroderma Myths

WEBINAR: August 15, 2018; 7 p.m. - 9 p.m. Eastern

This webinar is perfect for individuals with scleroderma and their caregivers.  It will provide you with updated and accurate information about scleroderma and will help to dispel the many scleroderma myths that we all hear. 

register

Stepping Out Logo 2018 Be Part of the Cure
 

What Do You Say
About Stepping Out?

When you talk to family, friends, and coworkers about being part of Stepping Out to Cure Scleroderma, what do you say?  We all have a way of talking about why we walk or run, why we're fundraising.  What's your "rap" when you talk to others about Stepping Out to Cure Scleroderma?  We want to hear your pitch. 

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

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
Scleroderma Family Registry & DNA Repository
 

Scleroderma Family Registry & DNA Repository

The Scleroderma Family Registry and DNA Repository is a research study directed by Maureen D. Mayes, M.D., M.P.H., at the University of Texas McGovern Medical School whose objective is to identify the genes that influence scleroderma. Patients diagnosed with Systemic Sclerosis (SSc; scleroderma) and normal, non-genetically related healthy controls will be included in the study.

(800) 736-6864, sclerodermaregistry@uth.tmc.edu

read more

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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Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

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Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 

   

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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