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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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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).
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.
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.
