Published May 10, 2017 by NORD
Washington, D.C., May 10, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on the confirmation by the …
Continue reading “NORD Issues Statement on Confirmation of New FDA Commissioner, Dr. Scott Gottlieb”
Read morePublished May 4, 2017 by NORD
Washington, D.C., May 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response …
Continue reading “NORD Issues Statement on Today’s Passage of the American Health Care Act”
Read morePublished May 1, 2017 by NORD
Washington (May 1, 2017) – On behalf of more than one hundred million Americans battling chronic and other major health conditions, a coalition of 10 patient organizations remains united in …
Continue reading “Leading Patient Advocacy Groups Stand Together to Oppose American Health Care Act”
Read morePublished May 1, 2017 by NORD
CALL TO ACTION: Congress could vote this week – please take a minute to phone your legislators and ask them to vote no (click) Washington, D.C., May 1, 2017—The National …
Read morePublished March 15, 2017 by NORD
Rare Impact Award Cynthia Tifft, M.D., Ph.D. Dr. Cynthia Tifft is working to solve some of the nation’s toughest medical mysteries. As the Director of the Pediatric Undiagnosed Diseases Program at …
Continue reading “Cynthia Tifft, M.D., Ph.D – 2017 Rare Impact Award Honoree”
Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Award Christine Grube After being diagnosed with Giant Axonal Neuropathy (GAN), a rare genetic disorder, Christine (Chrissy) Grube volunteered to be the first patient injected with …
Continue reading “Christine Grube – 2017 Rare Impact Award Honoree (Awarded Posthumously)”
Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Award Robert J. Desnick, M.D., Ph.D. “It’s very satisfying when your research efforts lead to new diagnostics or treatment for patients suffering from rare diseases.” This …
Continue reading “Dr. Robert J. Desnick, MD, Ph.D – 2017 Rare Impact Award Honoree”
Read morePublished February 28, 2017 by NORD
Danbury, Conn., February 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announced a year-long awareness campaign for …
Read morePublished February 13, 2017 by NORD
June 1-4 in Ashford, CT: Second-ever Rare Disease Summer Family Camp
Read morePublished February 9, 2017 by NORD
In celebration of Rare Disease Day®, NORD will co-host a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit. The tweetchat will take place on Tuesday, Feb. 28, …
Continue reading “Join NORD and ABC News for a Rare Disease Day® Tweetchat on Feb. 28”
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