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Archives for: July 12th, 2017

The National Health Council and NORD Commend House Passage of FDA User Fee Reauthorization; Urge Senate to Follow Suit

Written by Christina Jensen on July 12, 2017

Washington, D.C., July 12, 2017 – The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) commend the House of Representatives for passing the FDA Reauthorization Act (FDARA) with overwhelming bipartisan approval.

Passing this bill is a crucial step in reauthorizing four user fee programs that ensure the Food… 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