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Organizations supporting CMT

At a glanceNo one moves Charcot-Marie-Tooth (CMT) research forward alone. The organizations on this page fund research and run registries, clinics and studies. They also support families living with every type of CMT, including CMT2C. Much of what this site explains is known because of their work, and I am grateful to every one of them.

The CMT organizations

Three US-based organizations do a great deal of the work that matters to people with CMT2C. Each has its own focus, and together they cover research funding, clinical care, registries and community.

Charcot-Marie-Tooth Association (CMTA)

Started in 1983 by patients, families, clinicians and researchers. Its mission is to support the development of new treatments, improve quality of life for people with CMT and, ultimately, find a cure [109].

How the CMTA supports people with CMT2C

  • Organized a US Food and Drug Administration (FDA) Patient Listening Session for the CMT2C/TRPV4 community, a private virtual meeting on 20 October 2026 with speakers already chosen, so FDA decision-makers can hear directly from people living with CMT2C [104].
  • Brought the CMT2C community together with researchers and Actio Biosciences: a focus group in 2023 [39] and a clinical trial update meeting in December 2025, recorded for everyone to watch [103].
  • Explains how to join the Johns Hopkins TRPV4 natural history study [102], which for now is open only to people in the United States and Canada. The CMTA also runs Patients as Partners in Research, which gives early notice of trials [54].
  • Keeps the directory of CMT Centers of Excellence [85] and funds the Inherited Neuropathy Consortium [118].
  • Runs local branches that act as support groups [110], youth programs [111] and Camp Footprint, a free six-day camp for young people aged 10 to 18 with CMT [112].
  • Shares clear information on breathing, including a video with a lung specialist [114], and keeps the list of medicines to be cautious with [35].

Visit cmtausa.org

CMT Research Foundation (CMTRF)

A patient-led nonprofit with one mission: to raise funds to invest in science that will lead to treatments and cures for CMT [115].

How the CMTRF supports people with CMT2C

  • Is funding a Johns Hopkins study looking for a blood test to track CMT2C and measure response to treatment, and an Emerging Researcher Award project on blood vessel cells in a lab model of CMT2C [99].
  • Led the work of the ToPIC (Together Patients, Industry and Clinicians) coalition, whose shared recommendations on how CMT trials should be designed were published in 2026 [99].
  • Keeps a clinical trials tracker for every type of CMT [34].
  • Hosts the Global CMT Research Convention, where a day for patients includes a clinical trial fair [116].

Visit cmtrf.org

Hereditary Neuropathy Foundation (HNF) / CureCMT

Founded in 2001 by Allison Moore, who lives with CMT. Its work focuses on awareness and accurate diagnosis, support for patients and families, and research funding [108].

How HNF supports people with CMT2C

  • Has a dedicated CMT2C page with a clear, plain-language overview [2].
  • Runs the patient-led Global Registry for Inherited Neuropathies (GRIN), which as of July 2026 had more than 6,000 participants from more than 72 countries, with over 65 gene mutations among them [106].
  • Runs the CMT Biobank, where donated samples are linked to registry records to speed up research [107].
  • Offers CMT Genie, a telehealth genetic counseling and testing program [88], and a patient resources hub on bracing, mobility, insurance and legal rights [87].

Visit curecmt.org

Research networks and neuromuscular support

Muscular Dystrophy Association (MDA)

Supports people living with muscular dystrophy, amyotrophic lateral sclerosis (ALS) and related neuromuscular diseases, including CMT. Its mission is to empower the people it serves to live longer, more independent lives [117].

  • Is a collaborator on the Johns Hopkins TRPV4 natural history study [101], which it helped fund [7].
  • Helped fund key TRPV4 research through its grants, including the 2024 mouse study that pointed to blood vessel cells [15].
  • Publishes practical guidance on managing CMT [83].

MDA's CMT page

Inherited Neuropathy Consortium (INC)

A group of academic medical centers, patient organizations and research resources whose mission is to use clinical research to understand CMT and develop new and better treatments. It is now funded by the CMTA [118].

  • Runs INC 6601, a natural history study open to people with any type of CMT [52].
  • Built the TRPV4 registry behind the largest study of people with CMT2C so far [3].
  • If you have a TRPV4 change, ask for the TRPV4-specific survey when you join. Some INC clinics do not know about it, and it gets missed.
  • Its sites in the UK and Italy are the closest option for people outside the US and Canada, especially the London site, where Dr. Mary M. Reilly sees patients.

Visit the INC

Around the world

  • CMT UK. A donation-funded charity that supports people with CMT across the UK, raises awareness and funds research [119].
  • CMT Australia. Began as a support group in 1988 and is run entirely by volunteers, with a mission to unite everyone in Australia affected by CMT [120].
  • European CMT Federation. Unites CMT advocacy groups across Europe to raise awareness, promote better care and fund research [121]. It also shares guidance on nutrition [84].
  • CMT-France. Founded in 1990 by volunteer patients to support people with CMT and their families, reduce isolation and promote research [122].
  • CMTP.pl (Poland). A volunteer-run information site in Polish, started by the parents of a child with CMT [123].

Rare disease alliances

Patient-led communities

  • TRPV4 Related Hereditary Neuropathies (CMT2C, SPSMA & CDSMA). A Facebook group for sharing research, experiences and information about TRPV4-related conditions [105].
  • CMTA Facebook groups. Discussion groups that connect people with every type of CMT worldwide.
  • Breathe with MD, Inc. A volunteer-run charity that teaches people with neuromuscular disease about breathing-muscle weakness and oxygen safety [126]. It also runs a free online course for adults with neuromuscular disease and their loved ones, “Breathing Muscle Weakness 101”, which Stephanie Carmody highly recommends [306].

How you can support them

  • Add your data. Join GRIN [55], CMTA Patients as Partners in Research [54], or a natural history study [101].
  • Add your voice. Sign up for CMTA Patients as Partners in Research [54] to be invited to take part in activities such as FDA listening sessions, surveys and focus groups, and share your experience when organizations ask for it.
  • Show up and spread the word. Join a local branch, attend a convention or summit, or simply tell your doctors and family about these organizations.
  • Give, if you can. Every one of these organizations relies on donations and volunteers.

If you run or know an organization that supports people with CMT2C and should be listed here, please get in touch.

Next: People with CMT2C