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November 22, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Rare Caregivers Corner: Debra’s Story

Posted 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 20, 2019

TOPIC: Featured News

#NORDintheNews: NORD Featured in Syndicated Article on Parents’ Intuition and Rare Disease

Posted by Laura Mullen

This week, HealthDay published an article entitled “Don’t Give Up: Parents’ Intuition Spots a Rare Illness Before Doctors Do” on patients persistently advocating for their sick child although doctors were initially unable to pinpoint the condition. The article, featuring an interview with Sika Dunyoh, NORD’s Director of Education Programs, was syndicated and run by a number of media outlets,… Read More

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