Patients & Members Archives - NORD (National Organization for Rare Disorders)

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

Tags: FDA, Gene therapy, Listening Sessions, Patient Affairs Staff, patient listening sessions, Patient-Focused Drug Development

November 29, 2019

TOPIC: Featured News, Patients & Members

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

Posted at November 11, 2019 09:02 am 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

Tags: Juvenile Rheumatoid Arthritis, NORD, Reflex Sympathetic Dystrophy, research, Running for Rare, TCS New York City Marathon

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

Tags: NORD, Rare Caregiver Respite Program

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.

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

Tags: NORD survey, patient-powered initiatives, Rare disease research

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