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
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
Written by Christina Jensen on September 12, 2016
Written by: Kerri Nelson, graduate student at Penn State University and mother to a child with a rare disease.
As both a mother to a child with a rare disorder and a healthcare professional, I was at loss for words when my… Read More
Written by Christina Jensen on August 31, 2016
Come down to New York City for a day of fun in the park at either Luna Park in Coney Island or Victorian Gardens in Central Park! By attending the events at either park that day, a portion… Read More
Written by Christina Jensen on March 10, 2016
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