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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 14, 2019

TOPIC: Featured News, Patients & Members, Sticky Posts for Homepage

NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up

Posted at November 11, 2019 06:12 am by Laura Mullen

At NORD, we know that patient-powered initiatives change the world. Our priority is advancing rare disease research and innovation by working together to overcome critical challenges. 

In 1989 and again in 2003, NORD conducted a survey to better understand the barriers and facilitators of rare disease… Read More

November 4, 2019

TOPIC: Featured News, Patients & Members

November is National Family Caregivers Month

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

Did you know that November is National Family Caregivers Month? It’s a time to recognize family caregivers for their selfless devotion and dedication to supporting loved ones. NORD’s Rare Caregiver Respite Program is a first-of-its-kind assistance program that provides that well-deserved recognition, giving caregivers of rare disease patients the opportunity for a much-needed respite. NORD designed this… Read More