Rare Disease News

Be a Hero: Help NORD Empower the Rare Disease Community in Washington D.C. and in all 50 States.

Published December 10, 2015 by NORD

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Thanks to the support of our partners and donors, NORD has launched new initiatives that empower the rare disease community in every state and strengthen the patient voice in Washington D.C.

Pachyonychia Congenita Project

Published December 7, 2015 by NORD

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Connecting patients with Pachyonychia Congenita, PC Project says that it is “all about love”.

Be a Hero-Help NORD Help Patients Obtain Life-Saving Treatments

Published December 4, 2015 by NORD

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When you or a beloved family member is facing serious illness, the last thing you need to be concerned with is how you will pay for the medication.

Be a Hero: Help NORD Educate Current and Future Medical Professionals

Published December 2, 2015 by NORD

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Education has always been a key component of NORD’s mission and this year we expanded our outreach to two vitally important audiences – medical professionals and students preparing for health-related …

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National Spotlight on FDA and Duchenne Muscular Dystrophy: What This Means for Everyone with a Rare Disease

Published November 20, 2015 by NORD

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Next week, a Food and Drug Administration panel of experts will hold the first of two meetings to review two drugs designed to slow the muscle wasting effects associated with Duchenne …

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NORD Supports Nomination of Dr. Califf for FDA Commissioner

Published November 17, 2015 by NORD

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Advocacy

The National Organization for Rare Disorders (NORD) today urged the Senate HELP Committee to move quickly to advance the confirmation of Robert Califf, M.D., as the next Commissioner of the …

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Giving Spotlight: Parents Thank NORD for Saving Daughter’s Life

Published November 9, 2015 by NORD

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Laurie and Chuck Eallonardo were thrilled at the birth of their twins, Jenna and Caden. Laurie felt happy and relieved that she had been able to carry them for 38 …

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NORD Releases First-Ever State Progress Report for Rare Diseases

Published October 22, 2015 by NORD

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Announcing NORD’s State Progress Report, a Roadmap for State Improvement.

Raise Your Voice: Rare Disease Day 2016 is Coming

Published October 12, 2015 by NORD

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Date: February 29, 2016 Global Theme: Patient Voice Global Slogan: Join us in making the voice of rare diseases heard By definition, each rare disease affects a small segment of …

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The Undiagnosed: Orphans of the Rare Disease Community

Published October 5, 2015 by NORD

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While the approximately 7,000 known rare diseases run the full spectrum of symptoms and experience, rare disease patients encounter many common obstacles. Rare patients face incredible difficulty finding safe and …

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Rare Disease News

Access State Report Card Data