Rare Disease News

Get Involved in Your State on Rare Disease Day

Published December 17, 2015 by NORD

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On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare.

NORD Developing 20 Natural History Studies for 20 Rare Diseases

Published December 9, 2015 by NORD

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NORD to Build and Launch 20 Natural History Studies Based on Lottery System

Rare Disease Day 2016 Theme and Slogan Announced!

Published September 16, 2015 by NORD

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Theme: Patient Voice Slogan: Join us in making the voice of rare diseases heard It’s here! As the official sponsor and host of Rare Disease Day in the U.S., NORD …

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NORD Issues Statement on NIH Appointment of New Director for Office of Rare Diseases Research

Published September 4, 2015 by NORD

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Press Releases

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on the announcement that Petra Kaufmann, M.D., M.Sc., has been named director of …

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New Video from NORD Promotes Awareness of Rare Movement Disorder Neurogenic Orthostatic Hypotension

Published August 24, 2015 by NORD

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New video promotes awareness and educates doctors about Neurogenic Orthostatic Hypotension

Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases

Published June 17, 2015 by NORD

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Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” …

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Global Voice for Rare Disease Patients Launches Today: Rare Diseases International

Published May 28, 2015 by NORD

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Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today. More than 60 patient representatives from 30 countries are gathering in Madrid, …

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NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative

Published May 21, 2015 by NORD

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NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and …

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The Will to Live and the Strength for a Cure

Published December 18, 2014 by NORD

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The day Joshua Frase was born, his parents Alison and Paul, were given grave news about…