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: 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
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
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
“I want to shake up what people think is possible,” says Mary Kitlowski – “ both people with rare diseases, and people without. If I can make a difference by doing it, it makes it worth it.”
Mary has taken on what for most seems insurmountable – running races… Read More