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November 15, 2019

TOPIC: Patient Stories, Patients & Members

Rare Caregivers Corner: Q&A with Stephanie

Posted 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

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

Posted 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 12, 2019

TOPIC: Events, Featured News

Reflections of a First Time NORD Summit Attendee: Matthew’s Story

Posted by Laura Mullen

I attended the NORD 2019 Summit in Washington, DC a few weeks ago. It was my first chance to attend this conference organized by the National Organization for Rare Disorders and, admittedly, the first time I considered going. I had the impression that NORD was a policy and advocacy meeting (it was) with limited discussions on technical and… Read More

November 4, 2019

TOPIC: Featured News, Patients & Members

November is National Family Caregivers Month

Posted 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