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Get Involved

A total of 17 posts are filed under Get Involved
Rare Disease Report’s “Rare Disease Heroes” Nominations
This award was established to recognize hospitals that are dedicated to changing the way we manage rare conditions. Whether it is by… Continue Reading
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Register Now For the 2016 National Health Research Forum
Research!America’s National Health Research Forum is designed to take an unvarnished look at issues that are sometimes controversial,… Continue Reading
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A New Drug for Acomegaly Patients? MPowered Offers Oral Alternative
  CLINICAL TRIAL OF AN ORAL ALTERNATIVE If approved as the first oral somatostatin analog treatment for acomegaly, octreotide capsules may… Continue Reading
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Join the Everylife Foundation to Ensure the Rare Disease Community is Heard This Summer
During the summer recess, Members of Congress return to their home states to hear from constituents and attend community events.  Meeting… Continue Reading
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Mauli Ola Foundation Presents Hawaiian Art Contest for Cystic Fibrosis Awareness Month
How to enter: Submit an art piece that expresses “Why do you want to surf with Mauli Ola in Hawaii this December 2016?” You must ALSO… Continue Reading
RARE Webinar: Introducing Dr. Petra Kaufmann, NCATS Office of Rare Disease Research
Please join us November 17, 2015 at 11:30 PST/2:30 EST, as we host a special webinar formally introducing you to Dr. Petra Kaufmann, the… Continue Reading
“We Remained Vigilant” How One Mother’s Actions Made for a Faster Diagnosis
Story by Lisa Moore Watching my son, Brennan, struggle to meet development milestones through the first two years of his life was possibly… Continue Reading

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