Written by Christina Jensen on June 29, 2017
Update: June 29, 2017–Today, H 239, a bill that would establish a Rare Disease Adviosry Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state government, passed in the Senate. Director of State Policy at the National Organization for Rare Disorders (NORD), Tim Boyd, said,… Read More
Written by Jennifer Huron on April 5, 2017
NORD is pleased to share the Rare Action Network’s Spring 2017 State Policy Legislative Tracker. This document shows, state-by-state, which legislation we are tracking to help improve the lives of people and families with rare diseases. Together, we are taking action in 42 states and the District of Columbia… Read More
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
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