Scroll
To Top

Archives for: November 4th, 2021

Committing to Care, Access, Equity and Research: NORD Announces 31 Rare Disease Centers of Excellence

Written by Rohan Narayanan on November 4, 2021

National Organization for Rare Disorders® (NORD) provides new designation to medical centers to define standards for high-quality specialized care for rare disease patients

Washington, DCNovember 4, 2021— Today, the National Organization for Rare Disorders (NORD) announced 31 NORD Rare Disease Centers of Excellence across the United States, establishing a unique network of medical centers, clinics, and institutions to advance care and expand access for rare disease patients. The program is being led by NORD to promote outstanding treatment for rare disease… Read More

Tatton Brown Rahman Syndrome Community and NORD® Launch Natural History Study of Tatton Brown Rahman Syndrome (TBRS)

Written by Rohan Narayanan on September 22, 2021

Research study is open to participants worldwide to advance understanding and treatments for TBRS, a mutation of DNMT3A, causing overgrowth, autism, intellectual disabilities, orthopedic concerns, cardiac issues, and a variety of other health and developmental concerns.

Stanfordville, New York, September 21 — Tatton Brown Rahman Syndrome Community and the National Organization… Read More

Cure MLD, The Calliope Joy Foundation and NORD Launch A Research and Engagement Study of Metachromatic Leukodystrophy (MLD)

Written by Rohan Narayanan on August 16, 2021

Research study is open to participants worldwide to advance understanding and treatments for Metachromatic Leukodystrophy, a recessive genetic disorder that is characterized by the accumulation of fats (lipids) called sulfatides causing damage to the nervous system

Washington, DC, August 16, 2021—Cure MLD, an initiative of The Calliope Joy Foundation, and the… Read More

NORD Launches Natural History Study for Undiagnosed Rare Diseases

Written by Valaree DonFrancesco on February 28, 2020

Washington, DC, February 28, 2020—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, today launched the Undiagnosed Rare Disease Registry, a new study to collect de-identified information about hard-to-solve medical cases that will enable researchers to perform analyses at… Read More

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

Written by Valaree DonFrancesco on November 29, 2019
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… Read More