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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 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

December 2, 2019

TOPIC: Featured News, Get Involved

What Questions Would You Ask About Gene Editing?

Posted by Laura Mullen

Do you have questions about gene editing and how it may advance the treatment of people with rare diseases? Much has been written lately about the promise of CRISPR and other gene-editing tools as future treatments for many rare diseases. 

NORD is creating a new educational video on this topic, and we want to be sure… Read More

November 29, 2019

TOPIC: Featured News, Patients & Members

A First Time for Everything: Marissa’s Running for Rare Story

Posted by Laura Mullen
Marissa running the TCS NYC Marathon with Running for Rare

Hello! My name is Marissa and I had the privilege of joining NORD as a member of the Research Team earlier this year. Like many, my road to NORD began with a rare disease diagnosis. When I was five, I was diagnosed with Juvenile Rheumatoid Arthritis and at seven, I was diagnosed with Reflex Sympathetic… Read More

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