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Archives for: December 20th, 2019

NORD Welcomes Two New Members to Board of Directors

Written by Laura Mullen on December 20, 2019

Washington, DC, December 20, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, announces the appointment of two new members to its Board of Directors, effective immediately.

Joining the Board of Directors… Read More

NORD Announces Four New Board Members

Written by Lisa Sencen on July 19, 2019

Washington, DC, July 19, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the over 25 million Americans with rare diseases, announces the appointment of four new members to its Board of Directors, effective immediately.

Joining the Board of… Read More

Tweetchat on Genetic Testing, #genetest101

Written by Lisa Sencen on July 13, 2017

NRD-1082 ChildNatl_Tweetchat_v6

Tweetchat Coordinates
When: Thursday, July 13, 2:00 p.m. – 3:00 p.m. ET
Tweetchat Hashtag:… Read More

Senate Passes Short-Term Agreement to Accelerate Treatments for 15 Million Sick Children with Rare Diseases

Written by Jennifer Huron on September 23, 2016

Unanimous vote extends the Rare Pediatric Disease Priority Review Voucher Program with important policy changes through December

Washington, D.C., September 23, 2016 – On Thursday, the Senate reached an important compromise to accelerate new treatments to help 15 million sick children with rare diseases.

Led by Senators Robert Casey (D-PA), Johnny Isakson (R-GA),… Read More