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April 26, 2017

TOPIC: Press Releases, Research

Research Grants for Rare Diseases Available from National Organization for Rare Disorders

Posted by Jennifer Huron

Danbury, CT, April 26, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the availability of seven new research grants to study rare diseases. All U.S. and international researchers are encouraged to apply by the initial application deadline of June 23, 2017.

NORD’s research grant funding… Read More

April 19, 2017

TOPIC: Patients & Members, Press Releases, Research

Organic Acidemia Association Launches Largest-Ever Study of Organic Acidemias

Posted by Jennifer Huron

Research study is open to participants worldwide to advance understanding and treatments for rare organic acidemia disorders

ooa logoGolden Valley, Minn. and Danbury, Conn., April 19, 2017 The Organic Acidemia Association has… Read More

April 5, 2017

TOPIC: Advocacy

Advocacy Alert: Tell Congress to Act Now and Pass FDA User Fee Agreements

Posted by Jennifer Huron

Lawmakers are currently considering legislation to reauthorize FDA user fees. The FDA largely relies on user fees to operate and review innovative drugs, biologics, and devices.  Not only does this legislation provide critical funding for FDA to quickly review products, but the user fee agreements also provide patients and patient organizations with opportunities to participate in FDA initiatives… Read More

April 5, 2017

TOPIC: Advocacy

NORD Rare Action Network℠ Releases Spring 2017 State Policy Legislative Tracker

Posted by Jennifer Huron
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NORD is pleased to share the Rare Action Network’s Spring 2017 State Policy Legislative Tracker.  This document shows, state-by-state, which legislation we are tracking to help improve the lives of people and families with rare diseases.  Together, we are taking action in 42 states and the District of Columbia – up from 30 states and D.C. at the… Read More

April 4, 2017

TOPIC: Press Releases

NORD Names New Director of Membership

Posted by Jennifer Huron

Washington, D.C., April 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the recent hire of Debbie Drell as Director of Membership.  In her role, Debbie will be responsible for overseeing NORD’s Membership programs, which support the collective and individual needs of rare disease patient organizations,… Read More