Latest News

NIH Announces Funding to Establish and Strengthen Rare Disease Research Groups

The National Institutes of Health (NIH) has awarded approximately $26 million in grants in the fiscal year 2025 to begin the fifth cycle of funding for the Rare Diseases Clinical Research Network (RDCRN).

Honeycomb-style infographic showing the structure of the Rare Diseases Clinical Research Network with consortia names

Dystonia Coalition: Advice and Accomplishments from 15 Years of Dystonia Research

October 27, 2025

Developing Best Practices for Data Sharing in Rare Disease Research

September 26, 2025

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

Insights from Families and Caregivers Navigating Rare Diseases

August 27, 2025

$27M Grant Renews Cincinnati Children’s as Coordinating Center for the Rare Diseases Clinical Research Network

August 12, 2025

Group photo of approximately 50 DMCC members seated and standing in rows.

Statistical Solutions Improve Accuracy of Clinical Trials with Rescue Therapy in Myasthenia Gravis

July 7, 2025

Graph showing data simulation to illustrate the impact of rescue therapy on trial results.

Porphyrias Over Time: What We’re Learning from a Natural History Study

December 17, 2024

Leukodystrophy Over Time: What We’re Learning from a Natural History Study

November 26, 2024

Artificial Intelligence-Powered Telemedicine Tool Automates Scoring of Neuromuscular Examinations in Myasthenia Gravis

October 28, 2024

Screenshot of the graphic user interface used by doctors for remote examinations. Source: Bioengineering journal