Scleroderma Foundation eLetter
eLetter #434
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Greetings!  

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Our 2012 Resolution - 10,000 Followers

Facebook Logo This year, the Scleroderma Foundation wants to continue building a strong group of supporters online. Our 2012 resolution is to make it to 10,000 followers on our Facebook page so we can better get the word out about scleroderma - online and by word-of-mouth.

We currently have a supportive network of more than 7,100 patients, family members, friends, caregivers and others who want to find the cure. Through the Page, you'll get the latest research news, treatment updates, special event information and more - delivered straight to your Facebook Newsfeed.

Visit www.facebook.com/sclerodermaus so you don't miss out!

Already following us? Be sure to share the Page with your family and friends!
 

Rare Disease Day - Feb. 29, 2012   

There are about 7,000 rare diseases identified in the U.S. Rare diseases can be chronic, debilitating, severe and life-threatening. People living with rare diseases, like scleroderma, face challenges such as a delay in diagnosis, misdiagnosis, psychological effects and lack of support services.

Join the National Institutes of Health (NIH) celebrate the fifth annual Rare Disease Day, a day to celebrate and recognize all of the various rare diseases and research activities.

Rare Disease Day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients' lives.

To learn more, visit www.rarediseaseday.org.

10 Tips for Caregivers in the New Year 

CareGivers Logo Being someone's caregiver can be an overwhelming job. This year, make a resolution to be a better caregiver and take some tips from "Today's Caregiver."

Read the full list of things you can do to make your life as a caregiver a bit easier.

How to Look Your Best with an Autoimmune Disease

Huffington Post logo The problem with many autoimmune diseases, like scleroderma, is that you may not always have the energy to look and feel your best. With unpredictable symptoms and flare-ups, you can feel great one day and horrible the next.

"The Huffington Post" takes a look at ways to make sure you always look and feel your best - even if you're living with an autoimmune disease.

United Therapeutics PAH Treatment Approved for Use in France 

United Therapeutics announced in December 2011 that the French regulatory agency - Agence Francaise de Securite Sanitaire des Produits de Sante (AFSSAPS) - has approved intravenous use of Remodulin® (treprostinil) for the treatment of pulmonary arterial hypertension (PAH).

"It is with great satisfaction that intravenous use of Remodulin will now be available to PAH patients in Europe," said Roger A. Jeffs, Ph.D., President and Chief Operating Officer of United Therapeutics. "This approval significantly expands the treatment options for PAH patients using parenteral therapy in Europe."

Read the full press release from United Therapeutics.
2012 National  

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Actelion Pharmaceuticals, 2010 National Gold Sponsor

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