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eLetter #851 | February 7, 2020  

 Rare Disease Day logo 2018

 

February 29 is Rare Disease Day

There are more than 300 million people worldwide living with a rare disease. Together, across borders and across 6,000-plus rare diseases, we strive for more equitable access to diagnosis, treatment, care, and social opportunity.

  • Rare is many worldwide
  • Rare is strong every day
  • Rare is proud everywhere
Visit the Rare Disease Day website to learn ways that you can increase awareness about rare diseases and why it matters to everyone.

RARE DISEASE DAY

 education program

 

Scleroderma Education

Every chapter in the Scleroderma Foundation hosts at least one education program in their chapter area each year. Check the Scleroderma Foundation calendar to find education programs in your area.

CALENDAR

2020 National Conference E-Alert

 

Apply for a Conference Scholarship!

March 18 is the deadline for conference scholarship applications to be received in the Foundation's national office. Detailed instructions are included on the form, which is available on the National Conference website.

The National Patient Education Conference takes place in Bellevue, Washington, July 17-19, 2020.

Join others with scleroderma who are "Climbing Toward a Cure!" Learn from the top scleroderma experts in the world. Connect with others who have scleroderma. Talk with researchers in person.

SCHOLARSHIP

Orange County SG 12-15-19 

 

Scleroderma Support Groups

Connecting with others who have scleroderma can make a big difference in your life, particularly if you have never really had a chance to talk about your disease with another person traveling the same path in life.  Scleroderma is rare enough, you don't need to cope alone.  Find a support group near you.

SUPPORT GROUPS

Stepping Out Logo 2018 Be Part of the Cure

 

Be Part of the Cure!

You can become part of the cure by raising money at a Stepping Out to Cure Scleroderma walk or 5K run. Stepping Out is a rallying point for family, friends and coworkers to generate funding for the Foundation's mission: support, education, and research.

Two new dates have been added to the calendar this week.

STEPPING OUT

Clinical Trial Opportunities

ClinicalTrials.gov

Clinical Trials mapYou can track clinical trials for scleroderma, systemic sclerosis (SSc), pulmonary hypertension, and more at ClinicalTrials.gov. This robust website is published and maintained by the National Institutes of Health, U.S. National Library of Medicine. Search options include trials that are recruiting, country, state, and more. States highlighted in red in the map (left) have the most scleroderma-related trials. This concentration in specific states is solely the result of the geographic location of the institutions that focus on scleroderma research.

You can also find information about scleroderma-related clinical trials on scleroderma.org/centers, where designated "Scleroderma Research and Treatment Centers" list the trials taking place in their institutions.

CLINICAL TRIALS

 

 
 SPIN-SSLED Videoconference-based support group leader
 
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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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