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December 3, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

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

Posted at December 12, 2019 08:00 am by Laura Mullen

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 live to see her 30th birthday. She was 28. There was one drug recently approved for her disease, and while it… Read More

November 22, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Rare Caregivers Corner: Debra’s Story

Posted at November 11, 2019 09:10 am by Laura Mullen

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 Mom enjoyed having someone else besides me around for… Read More

November 15, 2019

TOPIC: Patient Stories, Patients & Members

Rare Caregivers Corner: Q&A with Stephanie

Posted at November 11, 2019 09:00 am by Laura Mullen

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 how she spent time away from caring for her daughter.

How did you use your respite?

Stephanie: I took a week away to have some mommy time.

What… Read More

November 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

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

Posted at November 11, 2019 09:51 am by Laura Mullen

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 officially diagnosed in 2017, with hypophosphatasia, a metabolic bone disease. Melanie has broken multiple bones without cause or direct trauma. Jacob lost a permanent molar… Read More