Written by Christina Jensen on March 28, 2019
A rare diagnosis can be a frightening and isolating experience, whether you are the patient or a caregiver for a loved one. However, NORD has created a video providing tips for newly diagnosed patients and families as they begin their journey down this new road…. Read More
Written by Laura Mullen on March 1, 2019
A few weeks ago, we asked the community what some misconceptions were about living with a rare condition. The Mighty collected your responses and published them in the article below on February 28 for #RareDiseaseDay.
On World Read More
Written by Christina Jensen on August 23, 2018
The following is a guest blog post from John Hopper, President of the Fibrolamellar Cancer Foundation, a NORD Member Organization.
Huge thanks to NORD leadership! Fibrolamellar Cancer was just approved as one of the Social Security Administration Compassionate Allowance diseases. Why? Because great people… Read More
Written by Laura Mullen on August 15, 2018
Washington, D.C., August 15, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and Healthline Media, the second largest health information site with 90 million monthly visitors, have announced the recipients of the… Read More
Written by Christina Jensen on August 1, 2018
Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking… Read More