Patient Resources

There is no single approach to living well with Charcot-Marie-Tooth disease. Good care is multi-modal, drawing on bracing, physical therapy, pain management, surgery, and much more, matched to your needs and your subtype. HNF has spent more than two decades building practical resources for the CMT community, organized here so you can find what matters most to you right now.

A smiling family of four stands close together on an outdoor deck overlooking a lake and pine trees, two parents with their young son and daughter.

Multi-modal careFrom bracing to surgery to physical therapy.

Built with the communityTopics shaped by what patients tell us matters.

20+ yearsEducational content refined over two decades.

You are not aloneConnect with others who understand CMT.

Everything HNF supports for living well with CMT, grouped so you can find what you need. Open any card for a full, plain-language guide.

Start Here

For the first days and weeks.

Newly diagnosed Just heard the word CMT? A step-by-step roadmap for your first weeks and months. Open → The Essential CMT Guide One plain-language overview: what CMT is, what to ask your care team, where to turn. Read online or download. Open → Genetic testing (CMT Genie) Confirm your exact subtype. It is the key to the right care and to research eligibility, and you can start the process yourself. Open → Symptom checklist Track what you are experiencing and walk into your next appointment prepared. Open →

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Medical Care & Treatment

The clinical side of living well.

Most people with CMT build a care team over time: a neurologist, a physical therapist, an orthotist, sometimes a surgeon. These guides walk through each piece of that care, so you know what to ask for and when to ask for it. None of it requires starting over with a specialist center: bring these pages to the providers you already have, and use them to shape the conversation.

Bracing & orthotics (AFOs) Ankle-foot braces, footwear, and custom bracing to improve stability and reduce falls. Open → Physical therapy & exercise Safe, low-impact movement to keep strength, flexibility, and balance. Open → Foot care & podiatry Caring for high arches, hammertoes, and calluses, and when to see a podiatrist. Open → Occupational therapy Hand function, adaptive tools, and strategies for daily tasks and work. Open → Pain management Approaches to neuropathic pain, cramping, and musculoskeletal pain. Open → Surgery Corrective foot and hand procedures, and what to consider before, during, and after. Open → Breathing & respiratory health Why some subtypes affect breathing, warning signs, and when to ask about a sleep study. Open → Nutrition Eating well with CMT, and how food choices affect energy, mood, and inflammation. Open → Neurotoxic drug list Medications and supplements that can worsen neuropathy. Review it with your doctor before starting anything new. Open → Anesthesia & surgery safety What to tell your surgical and anesthesia team. CMT calls for extra care before any operation. Open → Cannabis & CMT A neutral look at what people ask about cannabis for nerve pain, and what to discuss with your doctor. Open →

A woman in sunglasses riding an all-terrain outdoor wheelchair on a gravel path through green fields.

Daily Living & Independence

Real-world tools for everyday life.

Small changes add up to real independence, from the right mobility aid to a kitchen tool that actually works for weaker hands. Start with whatever would make today easier, and build from there. The products and strategies in these guides come from people living with CMT, not from a catalog, so they solve the problems that actually come up.

Mobility aids & assistive devices Canes, walkers, wheelchairs, and scooters: choosing the right support without giving up independence. Open → Home accessibility Simple changes and bigger modifications that make your home safer and easier to move around. Open → Adaptive driving Evaluations, hand controls, and vehicle modifications for safe driving. Open → Travel & accessibility Planning accessible trips: airports, mobility devices, and packing. Open → Adaptive Shoes & Products HNF's Amazon wishlist of 300+ curated products: footwear, adaptive clothing, kitchen tools, and mobility aids. Open →

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Mind, Relationships & Family

The parts of CMT that are not physical.

CMT lives in the body, but it touches mood, confidence, and the people closest to you. These pages cover the emotional side of the disease with the same practical honesty as the medical ones. Whether you are the patient, the partner, or the parent, there is a page here written for exactly where you are standing.

Emotional & mental health Coping with a progressive diagnosis, managing mood, and connecting with community. Open → Caregiver & family support If you are the partner, parent, or family member of someone with CMT, this is for you. You need support too. Open → Dating & relationships Confidence, disclosure, intimacy, and building strong relationships. Open → Family planning How CMT is inherited, options for starting a family, and questions for a genetic counselor. Open → Pregnancy with CMT What to expect through pregnancy, delivery, and postpartum when you have CMT. Open →

A woman wearing headphones taking notes in front of a laptop at a desk at home.

Rights, Work & Money

Know your rights, and your options.

You have legal rights at work, at school, and with your insurance company, and knowing them changes outcomes. These guides help you ask for what you are entitled to, in writing, with confidence. Each one breaks the process into steps, with the wording and documentation that tends to get accommodations and claims approved the first time.

Legal rights & employment Disability rights, workplace accommodations, and benefits navigation. Open → Financial & insurance help Coverage for braces and devices, appealing denials, and co-pay and assistance programs. Open → School & accommodations 504 plans, IEPs, and getting the right support for students of every age. Open →

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Community & the Cure

Where information becomes support, and patients drive the cure.

No one should face CMT alone, and community is also how the cure gets built. Meet the people, programs, and research that patients themselves power, then find your place in them. Start with a webinar or a podcast episode, join the registry when you are ready, and watch strangers turn into people who genuinely get it.

Clinical trials & research How to find trials, what taking part involves, and why your subtype matters for eligibility. Open → GRIN registry A few minutes to be counted. Every record makes the next study stronger. This is how patients build a cure. Open → HNF Summit The gathering where, for many people, the isolation lifts. Open → CMT Connect webinars Free online sessions where patients, families, and clinicians actually talk to each other. Open → Movement Is Medicine Virtual exercise classes built for CMT bodies. Open → Inspire CMT community Trade real-world advice online with others who truly get it. Open → Podcasts CMT Simplified breaks down the research; emBRACE It shares real stories. Open →

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Listen your way through all of it

HNF’s two podcasts cover the topics on this page and more, one honest conversation at a time. CMT Simplified breaks down complex medical news into clear, practical insights on living with and treating CMT. emBRACE It brings humor, heartfelt stories, and expert resources from hosts and guests who live boldly with disability.

Explore the podcasts

Newly diagnosed?

The most useful first step is confirming your subtype. From there, the right resources, care, and research opportunities fall into place.

Get genetic testing (CMT Genie) Start with: What is CMT?

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