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eLetter #769 | June 29, 2018  
Niagara Falls 2018 World Scleroderma Day
 

Niagara Falls Lights Up for
World Scleroderma Day

WATCH ON FACEBOOK LIVE

Tonight, Friday, June 29, at approximately 10 p.m. Eastern Time, Niagara Falls will light up in honor of World Scleroderma Day.  Visit the Scleroderma Foundation Facebook page to watch the Facebook Live video feed.

Many thanks to our colleagues at Scleroderma Canada.

Niagara Falls Facebook Live

2018 Rep Peter King NY Awareness Month
[L-R] Christina Loccke, Claudette Johnson, U.S. Rep. Peter T. King, and Rosemary Markoff
 

U.S. Rep. King Recognizes Scleroderma Awareness Month

On Friday, June 22, U.S. Representative Peter T. King (R-NY, 2nd District) spoke on the floor of the House of Representatives to recognize June as Scleroderma Awareness Month.  Representative King is the lead sponsor of H.R. 4638, National Commission on Scleroderma and Fibrotic Diseases Act of 2017to evaluate and make recommendations regarding improvements to the coordination and advancement of NIH-supported research activities related to fibrosis and fibrotic diseases.

sign up for action alerts

2018 Conference Save the Date 180x270  

Conference Workshop Preview

Join us in Philadelphia for the Grand Lecture at the 2018 National Patient Education Conference, July 27-29:

"Pulmonary Arterial Hypertension in Systemic Sclerosis in the Current Era," Lori Chung, M.D., M.S.

Workshop titles have been posted online in PDF form for download:  Friday, Saturday, Sunday.

Have you registered yet?
(Registration fee increases after July 5.) 

scleroderma.org/conference

Kids Room 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. 

Have you registered yet?  
scleroderma.org/conference

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Scleroderma & Exercise Focus Group

The Scleroderma Patient-centered Intervention Network (SPIN) is looking for people who have been diagnosed with scleroderma to participate in a 90-minute focus group on barriers and facilitators to physical activity. The focus group will take place during the Scleroderma Foundation's National Patient Education Conference in Philadelphia, Friday, July 27 and Saturday, July 28.

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

Stanford Health Care
 

Research & Treatment Centers

Standford University Scleroderma Center

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.

There are several centers in California, including the Standford University Scleroderma Center in Redwood City.  

Stepping Out Logo 2018 Be Part of the Cure
 

What's Your Fundraising Secret?

Asking for donations isn't easy for most folks for lots of reasons.  When you're committed to overcoming scleroderma you find ways to ask.  The more you do it, the more natural it feels.  Remember, they can't say yes if you don't ask. So what's your secret to asking for donations?   

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
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

reata_horizontal_logo-2018-Bronze Natl


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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