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July 9, 2014

TOPIC: Advocacy, Patients & Members

Knowing More About Noonan

Posted at July 7, 2014 04:51 pm by

Katie Thortenson of Chicago is a proud mother of two healthy sons: her eldest, Jake, is 6, and her youngest, Drew, is 2, but often mistaken to be younger. When people ask why he’s so small, Katie explains… Read More

June 17, 2014

TOPIC: Advocacy, Featured News, Industry, Medical, Patients & Members, Research

NORD Recommendations for Advancing Drug Discovery, Development, and Delivery

Posted at June 6, 2014 05:24 pm by Mary Dunkle

On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st Century Cures Initiative outlining ways to improve the discovery, development, and delivery of medical treatments in the U.S. Read More

June 2, 2014

TOPIC: Advocacy

NORD Outlines Steps to Promote Innovative Drug Discovery, Development and Delivery for Americans with Rare Diseases

Posted at June 6, 2014 08:54 pm by Mary Dunkle

National Organization for Rare Disorders Submits Comments in Response to Congressional 21st Century Cures Initiative “Call to Action”

The National Organization for Rare Disorders (NORD) has submitted comments to the Congressional 21st Century Cures initiative outlining nine steps to promote the development of treatments and cures for the 30 million Americans with rare diseases. Read More

May 22, 2014

TOPIC: Advocacy

NORD Board Member Testifies Before Energy & Commerce Health Subcommittee

Posted at May 5, 2014 06:58 pm by Mary Dunkle

Frank J. Sasinowski, representing the National Organization for Rare Disorders (NORD), was one of five individuals who testified on Tuesday before the U.S. House Energy and Commerce Health Subcommittee on advancing the development of treatments for Americans with unmet medical needs. (more…)

March 24, 2014

TOPIC: Advocacy, Featured News

Making Sure The Rare Disease Patient Voice is Heard on Capitol Hill

Posted at March 3, 2014 02:13 pm by Mary Dunkle

NORD recently hosted a Capitol Hill briefing on the topic “Rare Diseases in a Changing Healthcare Landscape”. Keeping our elected officials informed and aware is a critically important, and this briefing… Read More