Rare Disease News

Join the Running for Rare Team!

Published January 18, 2016 by NORD

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Patients, caregivers, and runners: sign up to get involved with the Running for Rare Team!

FDA Invites Patient Organizations to Organize Their Own Meetings on the PFDD Model

Published January 12, 2016 by NORD

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When the Patient-Focused Drug Development (PFDD) Initiative was first announced as part of the 2012 PDUFA reauthorization, many patient organizations expressed concern that the initiative’s public meetings would focus on …

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Register for the 2016 Rare Impact Awards

Published January 5, 2016 by NORD

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Join us in celebrating the rare disease community. Register for the 2016 Rare Impact Awards.

Wall Street Journal Publishes NORD Letter to the Editor

Published January 5, 2016 by NORD

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Advocacy

The following Letter to the Editor by NORD President & CEO Peter L. Saltonstall appeared in the Wall Street Journal (January 2, 2016). You read the letter online on the …

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FDA Approves 21 Orphan Drugs for Rare Diseases in 2015, Sets Record for Second Consecutive Year

Published January 4, 2016 by NORD

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The U.S. Food and Drug Administration announced today it approved 21 new orphan drugs to treat rare diseases in 2015, nearly half (47 percent) of all novel new drugs approved …

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Help Tara Pass School Bus Legislation

Published December 18, 2015 by NORD

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A great supporter of NORD, Tara Notrica, sent some staff members at NORD the following letter with the determination to get an important piece of legislation passed. We’re happy to share her …

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What the Omnibus Bill Means for Rare Diseases

Published December 18, 2015 by NORD

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Advocacy

UPDATE (12/18/2015 12:20 p.m.): The House and Senate voted Friday to pass the omnibus spending bill that funds the government through September 2016. The House moved first, passing the government funding bill …

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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.

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”.

Rare Disease News

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