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Friday, February 28, 2014

Update from Washington DC Rare Disease Day 2014

It is with great joy to announce that today Dr. Collins, NIH Director was presented our petition on behalf of Fibromuscular Dysplasia, Ehlers-Danlos Syndrome, Marfans and Sticklers. The petition was hand delivered in Washington DC by Sarah Kucharski, Patient and Founder of FMD Chat, and Fran Richmond Saplis, Patient and Advisor to FMDChat. I was told that Dr. Collins was impressed by the amount of signatures and the organization of the petition. He also stated that we have been making noise... good noise! So Thank you to each of you who signed, shared and made this possible. This accomplishment alone has raised awareness and brought attention to those who struggle daily with rare connective tissue diseases. Please share the news! 
Gentle Hugs,♥ Kari Ulrich

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