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Archives for: May 10th, 2017

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Written by Christina Jensen on May 10, 2017

PITTSBURGH, Penn., May 10, 2017—Today, Pennsylvania’s House of Representatives voted unanimously to pass HB 239, which would establish a Rare Disease Advisory Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state government.  The bill now moves on to the Senate for consideration.

“Helping the rare… 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

rareactionnetworkWashington, 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