Improving the lives of those with phenylketonuria (PKU) through clinical research.

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Participants make it possible for researchers to find new treatments, speed diagnosis and improve the lives of those affected by rare diseases.

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RDCRN Publishes First-Ever Annual Report

Read about research consortium achievements, early career investigators, patients and patient advocacy groups, and other network accomplishments.

2026 RDCRN Annual Report

Join the RDCRN for Rare Disease Day at NIH on February 27, 2026

Don’t miss the in-person and virtual celebration of Rare Disease Day at NIH on Friday, February 27, 2026, from 9 am to 5 pm EST.

Rare Disease Day at NIH. February 27, 2026. #RDDNIH. ncats.nih.gov/rdd

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

PHEFREE Updates

Newsletter of the Phenylalanine Families and Researchers Exploring Evidence

PHEFREE January 2026 Consortium Updates

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