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March 2, 2016

TOPIC: Featured News, Advocacy

NORD Founder Publishes Memoir Detailing Her Tireless Work as Parent-Advocate

Posted by Jennifer Huron

cover-oprhan-drugs-bookOne day, I wish everyone dealing with a rare condition will have access to a treatment. I really hope you will enjoy reading these memories… and learn more about this Global Crusade.” – Abbey Meyers

In her new memoir, Orphan Drugs: A Global Crusade, NORD founder Abbey Meyers shares her lifetime experience as a… Read More

March 1, 2016

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

Neurology Reviews Publishes The Rare Neurological Diseaes Special Report

Posted by Lisa Sencen

The Rare Neurological Disease Special Report™ was published on Rare Disease Day® in collaboration with the National Organization for Rare Disorders (NORD) as a supplement to the February 2016 issue of Neurology Reviews® (NR). This Special Report honors Rare Disease Day (February 29th, 2016) and is easily accessible at neurologyreviews.com.

The estimated 7,000 rare diseases, many of which… Read More

February 29, 2016

TOPIC: Featured News, Patients & Members, Advocacy, Events, Patient Stories, Get Involved

Today is Rare Disease Day®

Posted by Jennifer Huron

rdd-social-profileOn this day, join the 30 million Americans who are making the voice of rare diseases heard. Your participation on Rare Disease Day means more awareness and hope for 1 in 10 people and families across the country, and others around the world.

Social Media – We’re Trending!

Together, let’s keep… Read More

February 24, 2016

TOPIC: Press Releases, Advocacy

NORD Issues Statement on New FDA Commissioner Robert Califf, M.D.

Posted by Jennifer Huron

Dr. Robert CaliffThe following statement was issued today by Peter L. Saltonstall, President and CEO of NORD, on the confirmation by the U.S. Senate of Robert Califf, M.D., as Commissioner of the Food and Drug Administration:

“On behalf of the rare disease community, I want to congratulate Dr. Califf on… Read More