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Scleroderma Foundation
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eLetter #744 | January 5, 2018  
 YouTube Khanna 2017

Clinical Trials: Why Are They Important and Why Should I Participate?

In this recording from the Scleroderma Foundation's National 2017 Patient Education Conference
Dinesh Khanna, M.D., M.S., discusses the importance of participating in clinical trials and how to interpret them.  Specifically, you will learn different phases of clinical trials, what questions to ask when approached to do a clinical trial, and how clinical trials can help find an effective treatment for scleroderma.

watch video

Public Speaking Letter Writing

Public Speaking & Letter Writing
Webinar on Grassroots Advocacy
Monday, January 22, 2018; 2 p.m. Eastern

Learn gestures and body language, speaking to diverse audiences, visual aids and props, and delivering technical information. Go to https://join.me/scleroderma.org, dial 302-202-5900, enter conference ID 710-462-255.

join webinar

 20 percent Michigan webinar

The 20 Percent Scleroderma Man
WEBINAR: FOR MEN ONLY
January 18, 2018, 7-9 p.m. Eastern

An educational webinar for males only who have scleroderma presented by rheumatologist, Dr. Vivek Nagaraja, from Michigan Medicine. Topics will include gender specific aspects of scleroderma.

to register - to join meeting

 Eat Right Academy of Nutrition and Dietetics

Gluten in Your Medication:
What People with Celiac Disease Need to Know

This article from eatright.com, a website by the Academy of Nutrition and Dietetics, addresses gluten issues in foods and medications, and how to identify hidden sources of gluten.  This site is also a good resource for FODMAP recipes.  

read more

 PAH Voice Reprint Fall 2017 Med-IQ Gilead

PAH in Systemic Sclerosis
Learn More in a Special Article
from Scleroderma Voice

Pulmonary arterial hypertension (PAH) is a serious but rare condition that develops in approximately 8 percent  to 12 percent of patients with systemic sclerosis (SSc).  Learn more about risk factors, screening tests, and treatment options for PAH in a special article that appeared in the Fall 2017 edition of Scleroderma Voice magazine, the member magazine of the Scleroderma Foundation.  The article includes a questionnaire for you to complete and share with your physician.  

read about PAH in SSc

 phildelphia Patient Ed save the date 2018 

2018 National Patient Education Conference

Sign up for e-Alerts to stay up to date on the 2018 National Patient Education Conference in Philadelphia, Pennsylvania, July 27-29.

sign up for e-alerts

 Voice Fall 2017 Cover

Become a Member of the Scleroderma Foundation

Become a foundation member and receive exclusive benefits such as the "Scleroderma Voice," a quarterly magazine that features news and stories from patients and scleroderma experts.  Join today for just $25! ($35 outside the U.S.)    

join today  

Clinical Trial Update
Cumberland Pharmaceutical Heart

Research Participation Opportunity

Cumberland Pharmaceuticals is conducting a research study to determine whether a drug product called ifetroban will prevent cardiomyopathy in patients with diffuse scleroderma or pulmonary arterial hypertension associated with scleroderma. Eligible subjects will be reimbursed for their time and travel.

For more information, please call 615-627-4121 or email bkaelin@cumberlandpharma.com.

 
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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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