Your local and state governments, as well as the Federal government, each play an integral role in enacting and implementing policy that affects the health and well-being…
Written by Lisa Sencen 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 Lisa Sencen 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 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