Get Involved

Participate today to help raise awareness and find a cure for CMT!

CMT Inspire Community

The Charcot-Marie-Tooth (CMT) Support group and discussion Community connects, patients, families, friends and caregivers for support and inspiration. Hereditary Neuropathy Foundation sponsors the community and is an Inspire Trusted Partner.

We hope that you’ll take the time to join the CMT Support Community and connect with others who share our concerns related to diagnosis, managing symptoms, and treatment options such as bracing, orthotics, and exercise. Most of all, you will find comfort that you’re not alone.

It’s easy to get started. After you create a personal profile, you can immediately start participating in discussions. Extensive privacy features allow members to control exactly how their personal information is shared with others.

Global Registry for Inherited Neuropathies (GRIN)

Without patient participants, clinical trials are not possible. Thus, it is crucial that clinical registries be developed to provide the data and potential participants for researchers who are working on treatments for inherited neuropathies. Our registry, in comparison to other contact registries, collects essential clinical and genetic information on patients diagnosed with the various forms of hereditary neuropathies in order to advance therapy development for these debilitating disorders. By completing your profile, your information will be utilized to advance research and clinical trials that could lead to future treatments and cures.

Charcot Marie Tooth Research Network (CMTRN)

A Natural history study is part of HNF’s Charcot-Marie-Tooth Research Network (CMTRN) to participate in a Natural History Study in collaboration with The Natural Organization of Rare Disease (NORD) and supported by the U.S. Food and Drug Administration (FDA).

Calling all CMT Patients that are affected with the following types of CMT:

HNPP, CMT2A with visual impairment/optic atrophy, CMT2C, LMNA medicated AD CMT2, CMT4, CMT4a, 4B1, 1B2 & 4B3, 4C, 4D, 4E, 4F, 4G, 4H, 4J, CMT6, ADOA (OPA1) and GAN.

We would appreciate your participation in this first ever Natural History Study as we work towards treatments for patients that suffer with Charcot-Marie-Tooth and visual impairments.

CMT-Connect

Participate in an HNF CMT-Connect workshop in your area!

HNF encourages a holistic-educational and empowerment approach to its workshops.  We will provide participants with a safe environment to talk about the emotional dynamics of dealing with a chronic illness.  By acknowledging the physical and emotional challenges patients face on a daily basis, we will encourage and empower participants to be proactive advocates for their care, quality of life, and wellness needs

Team CMT

Team CMT is a grassroots community fundraising program founded by Chris Wodke, a CMT athlete who partnered with the Hereditary Neuropathy Foundation (HNF) to raise awareness for Charcot-Marie-Tooth disease. Currently we have 210 athletes in 38 states. We also have members in Australia, Canada, England, Finland, Vietnam, Iran, Scotland, France, Turkey, Poland, Norway and Sweden.

Building awareness about CMT is essential to increasing support, research, and helping to find a cure for the many forms of CMT. The members of Team CMT are at the front lines of raising CMT awareness in local communities around the world. Be part of an international effort to change the future for those living with CMT! Join us today and register to become a Team CMT member.