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Archives for: March 21st, 2020

US News & World Report Features NORD and Dr. Marshall Summar in “What To Do If Your Child Is Diagnosed with a Rare Disease”

Written by Laura Mullen on March 21, 2020

#NORDinthenews

NORD is featured as a rare disease resource and Dr. Marshall Summar, Chairman of NORD’s Board of Directors, is quoted extensively in an article published by US News and World Report that provides information and advice for parents dealing with a recent rare disease diagnosis for their child.

https://health.usnews.com/conditions/articles/when-your-child-has-a-rare-disease

 

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