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Archives for: November 29th, 2019

A First Time for Everything: Marissa’s Running for Rare Story

Written by Laura Mullen on November 29, 2019
Marissa running the TCS NYC Marathon with Running for Rare

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

Rare Caregivers Corner: Debra’s Story

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

Rare Caregivers Corner: Cathy’s Respite Story

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