Written by on March 15, 2017
Rare Impact Awards
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
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
Written by Christina Jensen on December 22, 2016
Today we are sharing the story of one little girl… Read More
Written by Jennifer Huron on December 13, 2016
Washington, 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
Written by Jennifer Huron on June 22, 2016
NORD has recently become a member of a coalition of patient groups in Oregon seeking to reduce out-of-pocket drug costs for patients.
The Oregon legislature recently created a Prescription Drug Cost Working Group which will be meeting for the first… Read More