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Archives for: December 1st, 2014

Living With Essential Thrombocythemia (ET)

Written by Mary Dunkle on June 23, 2014

In 1992, Antje Hjerpe was diagnosed with a rare blood disease known as “essential thrombocythemia” or ET. A review of previous lab records showed that she had  been living with this disease for at least six years prior to diagnosis. Read More

NORD Recommendations for Advancing Drug Discovery, Development, and Delivery

Written by Mary Dunkle on June 17, 2014

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

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

Written by Mary Dunkle on June 2, 2014

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… Read More