Written by Laura Mullen on November 29, 2019
Hello! My name is Marissa and I had the privilege of joining NORD as a member of the Research Team earlier this year. Like many, my road to NORD began with a rare disease diagnosis. When I was five, I was diagnosed with Juvenile Rheumatoid Arthritis… Read More
Written by Laura Mullen on November 22, 2019
One of the first caregivers to participate in the Rare Caregiver Respite Program, Debra shared with NORD how she used her award.
“I was able to meet and have dinner with one of my Peace Corps friends. We hadn’t seen each other since we left Romania in June 2001! I think… Read More
Written by Laura Mullen on November 8, 2019
My husband and I got away for a whole week! We went to a resort where we could relax by the pool and catch up on much needed sleep. To know that we had a qualified CNA taking care of our little one was such a blessing. Family… Read More
Written by Laura Mullen on October 29, 2019
On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, 2019, to tell their stories and show their stripes. Ambassadors from 20 states… Read More
Written by Laura Mullen on September 19, 2019
Launched by C-Path and NORD through an FDA grant, the goal of the new platform is to accelerate the development of cures by addressing the need to better characterize rare diseases.
TUCSON, Ariz. and WASHINGTON, September 19, 2019 — The Critical Path Institute… Read More