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August 20, 2019

TOPIC: Featured News

NORD’s Mary Dunkle Comments on Diagnosis Challenges and Urges Caution on Using Internet Sources in New Article

Posted by Laura Mullen

In a recent article published by HealthDay entitled “‘Dr. Google’ Helps Some Patients Diagnose a Rare Disease,” NORD’s Mary Dunkle notes common reasons for rare disease diagnosis delays and cautions patients and caregivers regarding online sources, recommending that people “use only trusted sources such as the U.S. National Institutes of Health, teaching hospitals and patient organizations whose information is… Read More

August 19, 2019

TOPIC: Uncategorized

Read the Inspiring Personal Story of a NORD Member Organization Leader

Posted by Laura Mullen

Neena Nizar, founder and president of the nonprofit Jansen’s Foundation, a NORD Member, was interviewed at the Living Rare, Living Stronger NORD Patient and Family Forum by BioNews Service in June. Read her inspiring personal story here.

 

#NORDinthenews

August 14, 2019

TOPIC: Events, Featured News

FDA Acting Commissioner to Deliver NORD Rare Summit Keynote

Posted by Lisa Sencen

We’re delighted to announce that Acting FDA Commissioner, Norman E. “Ned” Sharpless will deliver the keynote address at this year’s Rare Diseases & Orphan Products Breakthrough Summit. Sharpless, a physician and scientist, became Acting Commissioner of FDA earlier this year and previously served as the director of the National Cancer Institute.

In addition… Read More

August 7, 2019

TOPIC: Featured News, Press Releases

FUNDED BY FDA, C-PATH and NORD TO LAUNCH RARE DISEASE DATA ANALYTICS PLATFORM

Posted by Lisa Sencen

 

The collaborative project between the organizations will kick off at a launch meeting in September and will aim to reduce barriers for the development of new treatments and cures for rare diseases.

 

TUCSON, Ariz. and WASHINGTON, August 7, 2019 Read More

August 2, 2019

TOPIC: Patient Stories

Rare Caregiver Respite: Beth’s Story

Posted by Lisa Sencen

Earlier this year, NORD launched the first-of-its-kind Rare Caregiver Respite Program, designed to enable caregivers to take a much-deserved respite. Beth Pruitt, caregiver for her daughter and one of the first to participate in the new program, shared how she will utilize the respite.

“My daughter, Danielle, and I travel to visit… Read More