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Archives for: May 4th, 2017

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

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


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

Running on Air for Rare Disease Day

Written by Heidi Bjornson-Pennell on February 11, 2016

“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