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
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
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
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
2015 was a bellwether year for the NORD public policy team and some exciting growth was seen that could not have come at a better time; the next few years will be some of the most critical in rare disease public policy since the inception of the Orphan Drug Act… Read More