Rare Disease News

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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Register: Rally for Medical Research Hill Day 2016, Sept. 21-22

Published June 29, 2016 by NORD

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Save the date for Sept. 21-22 for a nationwide day of action! Join NORD and 300+ partner organizations as we ‘rally’ for medical research as part of the annual Rally …

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Rare Action Network: NORD and Patient Groups in Oregon Seek to Reduce Out-of-Pocket Drug Costs for Patients

Published June 22, 2016 by NORD

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NORD has recently become a member of a coalition of patient groups in Oregon seeking to reduce out-of-pocket drug costs for patients. The Oregon legislature recently created a Prescription Drug …

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Join the Team: Running for Rare Takes on Hartford

Published June 21, 2016 by NORD

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Join us in Hartford, Conn. on October 8th! For the first time, NORD’s charity marathon team, Running for Rare, will participate in the Eversource Hartford Marathon. We are thrilled to have the team …

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Happy Father’s Day from NORD

Published June 17, 2016 by NORD

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The strength of the rare disease community is defined by the people in it, and rare dads are some of our strongest advocates. You are always there to try and …

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