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Archives for: December 21st, 2017

Join Us for Rare Disease Day®

Written by Lisa Sencen on December 21, 2017
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The National Health Council and NORD Commend House Passage of FDA User Fee Reauthorization; Urge Senate to Follow Suit

Written by Lisa Sencen 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

NORD Issues Statement in Response to Delay in Consideration of the Senate Better Care Reconciliation Act

Written by Lisa Sencen on June 27, 2017

Washington, D.C., June 27, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the delay in consideration of the Senate Better Care Reconciliation Act:

“Today, Senate Leadership announced they will not hold a… Read More

NORD Issues Statement on Today’s Passage of the American Health Care Act

Written by Lisa Sencen on May 4, 2017

Washington, D.C., May 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the passage of the American Health Care Act:

“Today the House of Representatives passed American Health Care Act (AHCA). We… Read More

Advocacy Alert: Illinois Rare Disease Commission Bill

Written by Heidi Ross on July 15, 2016

HDR_PolicyAlert_2

UPDATE:  July 11, 2016

Illinois HB 4576 is close to passing!  This bill would establish a Rare Disease Commission that would give patients – many of whom are too young or sick to speak for themselves – a voice in the state government.  The… Read More