Latest News

Developing Best Practices for Data Sharing in Rare Disease Research

The RDCRN has developed principles and guidance to ensure that network research teams can effectively share data with others.

Read More

Chart showing agreements among the RDCRN parties involved in data sharing.

Former LDN Fellow Paves the Way for Earlier Diagnosis in Metachromatic Leukodystrophy

September 24, 2024

Read More

Senior Researcher Spotlight: Mohamed Kazamel Investigates Autonomic Neuropathy in the Porphyrias

January 10, 2023

Read More

Senior Researcher Spotlight: Corey McMillan Integrates Multidisciplinary Approaches to Study Neurodegenerative Diseases

July 18, 2022

Read More

Senior Researcher Spotlight: Kent Lai Develops Gene-Based Therapeutics for Congenital Disorders of Glycosylation

June 21, 2022

Read More

Kent Lai, PhD, sitting in a chair in his lab

Senior Researcher Spotlight: Fernando Scaglia Explores Novel Therapeutic Approaches for Mitochondrial Disorders

June 7, 2022

Read More

Senior Researcher Spotlight: David Peterson Develops Innovative Technologies for Dystonia

May 10, 2022

Read More

Senior Researcher Spotlight: Linda Kusner Explores the Biology Behind Myasthenia Gravis

February 25, 2022

Read More

CEGIR’s Glenn Furuta Receives NASPGHAN 2021 Harry Shwachman Award

December 14, 2021

Read More