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Archives for: April 4th, 2017

NORD Names New Director of Membership

Written by Jennifer Huron on April 4, 2017

Washington, D.C., April 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the recent hire of Debbie Drell as Director of Membership.  In her role, Debbie will be responsible for overseeing NORD’s Membership programs, which support the… Read More

Beth Nguyen, R.N. – 2017 Rare Impact Award Honoree

Written by on March 15, 2017

2017 Honoree
Rare Impact Awards

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Beth Nguyen, R.N.

Mother, wife, nurse, patient, advocate, and leader; Beth Nguyen wears multiple hats, and not one loosely.

In 2007, before she began to experience health problems, Beth had a job she loved as… Read More

WEBINAR: In-Depth look at the 2016 NORD State Policy Report Card

Written by Christina Jensen on January 24, 2017

Please join NORD Rare Action Network team Tuesday, January 24, 2017 at 3:00pm EST for a webinar to take an in-depth look into the recently published 2016 state policy report card.

Tim Boyd, Associate Director of State Policy will present on the findings in the report card… Read More

State Report Card to Help People with Rare Diseases

Written by Jennifer Huron on December 13, 2016

rareactionnetworkWashington, D.C., December 13, 2016—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders… Read More