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Archives for: June 20th, 2018

Last Rare Disease Day Event of 2018 a Success in Pennsylania

Written by Laura Mullen on June 20, 2018

*The following article ran 6/19/2018 via Pennsylvania Legislative Services, an online legislative research, tracking, media, and analysis service providing access to Pennsylvania’s policy making process.

SUPPORTERS, LAWMAKERS CELEBRATE RARE DISEASE AWARENESS DAY

By Derek Snyder, Pennsylvania Legislative Services | June 19, 2018

Dozens of advocates joined… 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