Latest News

Batten Disease Clinical Research Consortium Announces 2026 Early Career Investigator and Pilot Project Grant Awardees

The BDCRC has awarded the 2026 Early Career Investigator Grant to Aikaterini (Katerina) Chatzipli, PhD, and the 2026 Pilot Project Grant to Ruchira Singh, PhD.

Headshots of Dr. Chatzipli and Dr. Singh

Song: Every Dose of Hope (Living with a Rare Disease)

April 10, 2026

Members of MGNet performing the song "Every Dose of Hope".

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