Archive for the ‘Advocates’ Category

A Dedicated Rare Disease Platform to Find Answers. Faster.

April 8, 2016 9:05 pm

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We have tirelessly searched for answers and have sacrificed nearly everything for us and for our loved ones with a rare or undiagnosed disease to receive the information and...

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Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families

March 25, 2016 4:09 pm

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Thank you to the filmmakers for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease....

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