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… Read More

Rare Disease Advisory Council Bill Moves through Pennsylvania House

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

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

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

Rare Action Network: NORD and Patient Groups in Oregon Seek to Reduce Out-of-Pocket Drug Costs for Patients

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

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