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An NIH-Funded Rare Diseases Clinical Research Network Consortium

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.

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

NIH Announces Funding to Establish and Strengthen Rare Disease Research Groups

October 29, 2025

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Consortium Spotlight: Advancing Discoveries in Phenylalanine Disorders

November 1, 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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RDCRN Launches Contact Registry to Connect Patients, Researchers and Advance Rare Disease Research

March 14, 2022

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Three icons featuring a trio of silhouettes, a chemistry flask and stethoscope, and a contact card appear next to the text, Join Our Contact Registry - Learn about opportunities to participate in our research, receive information about our work, connect with our consortia and patient advocacy groups. rdcrn.org/registry appears next to the Rare Diseases Clinical Research Network logo

Stories of Patient Engagement in Rare Diseases Research

June 2, 2020

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The Phenylalanine Families and Researchers Exploring Evidence (PHEFREE) Consortium is part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Division of Rare Diseases Research Innovation (DRDRI). PHEFREE is funded under grant number U54HD100982 as a collaboration between NCATS, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke (NINDS), and the Office of Dietary Supplements (ODS). This website is hosted by the network's Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, which is funded by NCATS and NINDS under grant number TR002818. The content of this website is solely the responsibility of the PHEFREE administrative coordinating center at Oregon Health & Science University and does not necessarily represent the official views of the NIH.

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