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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

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

Written by Christina Jensen 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

Penn State Graduate Rare Disorder Survey

Written by Christina Jensen on September 12, 2016
rare-disorder-survey

Written by: Kerri Nelson, graduate student at Penn State University and mother to a child with a rare disease.


masonAs both a mother to a child with a rare disorder and a healthcare professional, I was at loss for words when my… Read More

NORD Fundraiser: Paint for a Cause

Written by Christina Jensen on March 10, 2016

r4r-muse-paintbar-fundraiser

If you are local to Foxborough, Massachusetts, we invite you to the Muse Paintbar for a fun night of painting and fundraising for the Running for Rare Marathon team supporting NORD. 40% of the proceeds will go towards Martha’s fundraising goal for running the… Read More