Rare Disease News

Penn State Graduate Rare Disorder Survey

Published September 12, 2016 by NORD

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Please take a moment to help PSU graduate student, Kerri, make a change for the rare disease community.

Celebrating Awareness: One-Year Anniversary of Rare Disease of the Day

Published September 12, 2016 by NORD

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This summer marked our one-year anniversary of hosting the Rare Disease of the Day campaign on our Facebook page and website. It has been a productive campaign, sharing information on …

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Becoming a Marathon Runner

Published September 9, 2016 by NORD

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Written By: Kate Bartlett “I came across NORD’s website when I was doing research for my friend Heather Von St. James who was diagnosed with mesothelioma, 3 1/2 months after giving …

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NORD Responds to AHIP Report on Orphan Drug Act

Published September 2, 2016 by NORD

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Advocacy

By Peter L. Saltonstall One of the most successful pieces of legislation ever passed by the Congress is the Orphan Drug Act of 1983 (ODA). It was intended to stimulate …

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Key Dates Approaching for NORD Summit

Published August 18, 2016 by NORD

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Researchers have the opportunity to present research to a large and diverse audience during the 2016 #NORDSummit

NORD Publishes Expanded Access FAQ

Published August 15, 2016 by NORD

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NORD has published a new guide to help people and caregivers living with rare diseases understand expanded access and how to access unapproved medicines. In the guide, NORD answers frequently asked questions including …

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NORD Issues Statement in Response to PDUFA VI Commitment Letter

Published July 21, 2016 by NORD

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Advocacy

On July 15, the Food and Drug Administration released the performance goals letter for the reauthorization of the Prescription Drug User Fee Act, also known as PDUFA VI. The PDUFA …

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Advocacy Alert: Illinois Rare Disease Commission Bill

Published July 15, 2016 by NORD

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UPDATE: July 11, 2016 Illinois HB 4576 is close to passing! This bill would establish a Rare Disease Commission that would give patients – many of whom are too young …

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NORD Issues Statement as Senate Postpones Vote on Cures Legislation

Published July 14, 2016 by NORD

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Advocacy

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), as the Senate announced it would not vote on its …

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July 13 Day of Action: Last Chance for Zika Funding

Published July 13, 2016 by NORD

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Time is running out – today may be our last chance before September for anything to happen on the critical Zika package. This Friday, Senators will depart D.C. for their 7-week …

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