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Patient Stories

NORD’s Work with FDA Gives Patients a Chance to Be Heard in Drug Development

By Debbie Drell, Director of Membership

My sister was diagnosed with a rare disease, pulmonary hypertension, in September of 1998. At some point during her diagnosis, she was told she wouldn’t… Read More

Rare Caregivers Corner: Debra’s Story

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… Read More

Rare Caregivers Corner: Q&A with Stephanie

NORD’s Rare Caregiver Respite Program provides eligible caregivers the opportunity to take a much-deserved break while knowing their loved one is being well cared for. Caregiver Stephanie recently answered a few quick questions about… Read More

Rare Caregivers Corner: Cathy’s Respite Story

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… Read More

New NORD Member PALS Shares About the Impact of Free Flights for the Rare Disease Community

Patient AirLift Services (PALS) recently provided air and ground transportation for a mom and son who went through years of not knowing the cause of bone pain, fatigue, brain fog and weakness. Both were… Read More