Rare Disease News

Miss Pre-Teen Connecticut Visits NORD

Published September 11, 2015 by NORD

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Meet Irelynn! She is 11 years old and was recently crowned Miss Pre-Teen Connecticut. Her platform for pageants is pancreatic cancer and she has been raising awareness for NORD’s member …

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The Sturge-Weber Foundation

Published September 8, 2015 by NORD

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Member Spotlight: The Sturge-Weber Foundation seeks to educate the medical community, government agencies, and the general public.

Hope for Kids with Heart Disease: September is Children’s Cardiomyopathy Awareness Month!

Published September 3, 2015 by NORD

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This blog post was written by Lisa Yue, Children’s Cardioymyopathy Foundation’s Founding Executive Director. When one thinks of heart disease, adults usually come to mind. The reality is children …

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NORD’S Free Student Membership: Sign up Today!

Published September 2, 2015 by NORD

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A few months ago, NORD and our members hosted a “Meet the Patients” event at the annual conference of the American Medical Student Association (AMSA). We were thrilled with the …

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Miss Connecticut Talks to NORD about Rare Diseases, the Miss America Pageant, and Voting for America’s Choice

Published August 31, 2015 by NORD

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Next month, millions of Americans will tune in to watch the Miss America Pageant, airing live on ABC on September 13, 2015, from Atlantic City, New Jersey. We were excited …

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New NORD PSA

Published August 12, 2015 by NORD

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Sean Hepburn Ferrer, son of Actress Audrey Heburn, calls for more awareness of rare diseases in new PSA with NORD

Rare Action™ Road Tour, Salt Lake City, UT

Published August 7, 2015 by NORD

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Greetings from Salt Lake City (Day 2), As promised, I’m happy to introduce you to NORD’s State Ambassador for Utah, Gina Szajnuk. Say hello, Gina: “I am the mother of three children …

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Rare Disease Report and NORD Announce Editorial Collaboration

Published August 6, 2015 by NORD

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NORD announced today, an editorial collaboration between Rare Disease Report and NORD, an exciting opportunity for the rare disease community.

Rare Action™ Road Tour, Salt Lake City, UT

Published August 6, 2015 by NORD

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Greetings from Salt Lake City, This is part 1 of 2 of two posts on SLC. Tomorrow I will post on our State Ambassador, Gina Szajnuk. Today, I’m happy to share a …

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