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Dedicated to conducting clinical research in different forms of CMT and improving the care of patients.



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Patients and researchers working together moves CMT research forward, making it possible for researchers to find new treatments, speed up diagnosis, and improve the lives of those affected by rare diseases.

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Training Program for Clinical Research in Rare Disease Launches New Session

The National Institutes of Health-funded R25 Rare Disease Clinical Research Training Program is launching a new training program for clinical research in rare disease. Now in its seventh year, this year-long, hybrid, free program is designed to support new investigators in the field of rare disease clinical research.

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

Consortium Spotlight: Advancing Discoveries in Charcot-Marie-Tooth Disease

The Inherited Neuropathy Consortium (INC) is a group of academic medical centers, patient advocacy organizations, and clinical research resources dedicated to conducting clinical research in Charcot-Marie-Tooth disease, a group of disorders that affect the peripheral nerves. Here, program manager Shawna Feely, MS, LGC, and principal investigator Michael Shy, MD, share the history of the consortium, current research, and future plans. 

Inherited Neuropathy Consortium logo

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

The Rare Diseases Clinical Research Network (RDCRN) is launching a contact registry to connect rare disease patients with researchers and advance rare disease research. The registry will collect and maintain the contact information of people who want to receive information about rare diseases research. It will also inform participants about opportunities to participate in research.

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. appears next to the Rare Diseases Clinical Research Network logo