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June 4, 2014

TOPIC: Medical, Patients & Members, Research

Thoughtful Biosimilars Policy Is Best Way to Ensure Optimum Patient Outcomes

Posted by

Biologic therapies have been lifesaving and life changing for the patients we represent – more than 30 million Americans with more than 7,000 rare diseases. Literally, hundreds of thousands of rare disease patients have found their lives bettered by biologics and we are collectively grateful to the innovators and companies that have made this possible. Read More

June 2, 2014

TOPIC: Advocacy

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

Posted 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 30, 2014

TOPIC: Industry, Medical, Patients & Members

Images from the Portraits of Courage Celebration

Posted by admin

NORD’s Portraits of Courage Celebration on May 8, 2014, highlighted the many ways in which patients and caregivers display great dignity and grace in living with challenging rare diseases. Patients and families featured in the Portraits of Courage gallery providing an inspiring presence at the event.

We thank our sponsors and supporters who made it all possible, and extend congratulations… Read More

May 22, 2014

TOPIC: Advocacy

NORD Board Member Testifies Before Energy & Commerce Health Subcommittee

Posted 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…)