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.

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

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.

Pre-Doc Preparatory Program (P³) in Translational Research

June 23, 2025

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MGNet Announces 2025 Scholars

December 9, 2024

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Headshots of Dr. Sikorski and Dr. Wildberger

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

September 24, 2024

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FCDGC Announces 2023 Pilot & Feasibility Project Awardee and Career Enhancement Fellow

April 11, 2023

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A photo of Aryal Rajindra and Idris Wazeerud-din.

Training Program for Clinical Research in Rare Disease Launches New Session

November 9, 2022

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Screenshot from a presentation on the Rare Diseases Research R25 Curriculum Grant

CPIC Announces 2022 Pilot Project Award Recipient

October 26, 2022

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Early Stage Investigator Spotlight: Stephanie Sacharow Helps Patients with Phenylketonuria Overcome Barriers to Treatment

October 25, 2022

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