Latest News

Early Stage Investigator Spotlight: Andrew D. Tran, MD

Meet Andrew D. Tran, MD, an early stage investigator with ARDVARC.

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

April 10, 2026

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

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

October 27, 2025

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Developing Best Practices for Data Sharing in Rare Disease Research

September 26, 2025

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

Insights from Families and Caregivers Navigating Rare Diseases

August 27, 2025

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

August 12, 2025

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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

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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

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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

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