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.

Insights from Families and Caregivers Navigating Rare Diseases

August 27, 2025

Read More

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

August 12, 2025

Read More

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

Read More

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

Read More

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

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

November 26, 2024

Read More

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

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

October 28, 2024

Read More

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

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

September 25, 2024

Read More

Pompe Disease Over Time: What We're Learning from a Natural History Study

Eosinophilic Gastrointestinal Diseases Over Time: What We’re Learning from a Natural History Study

July 22, 2024

Read More

Eosinophilic Gastrointestinal Diseases Over Time: What We’re Learning from a Natural History Study