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Archives for: March 21st, 2017

NORD Issues Statement on President Trump’s Address to Congress

Written by Jennifer Huron on March 1, 2017

NORD Issues Statement on President Trump’s Address to Congress

Washington, D.C., March 1, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to President Trump’s first speech to Congress:

“Yesterday evening, President Trump… Read More

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

Written by Mary Dunkle on January 12, 2016

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 just 20 groups of diseases. However, FDA has now provided a pathway for extending the model to many other diseases.

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