Driving
CMT Research
with the
Patient’s Voice
With your help support love
nothing is impossible!
Drive Research
Drive Research
Turn your symptoms into science
Join Team CMT
Join Team CMT
Pledge Monthly
Pledge Monthly
Start your Monthly Gift of $10 today or consider the many other ways to give!
Research CMT
Research CMT
HNF has been conducting patient-focused research dating back to 2007.
Gift a Birthday
Gift a Birthday
Celebrate your birthday with a purpose! Start a Birthday CMT Fundraiser.
Welcome To The
Hereditary Neuropathy Foundation
Our mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support people living with CMT and their families with critical information to improve quality of life, and fund research that will lead to treatments and cures.
What is CMT?
Genetic Testing
Patient Resources
Pediatrics & CMT
Newsletter
Join for notifications on events, campaigns, & news
About HNF
Founded in the early 2000’s, HNF developed the Therapeutic Research in Accelerated Discovery (TRIAD) as a collaborative effort with academia, government, and industry to develop treatments for CMT.
In accordance with the FDA’s patient-focused drug development guidance for enhancing the incorporation of the patient’s voice in medical product development and regulatory decision making, HNF has developed a regulatory strategy to support FDA Guidelines to engage with industry early on and assist with collecting and submitting robust and meaningful patient experience data, and other relevant information from patients and caregivers, such as identifying what is important to patients.
HNF is actively committed to increasing awareness and accurate diagnosis of CMT and providing patients and families with critical information to improve quality of life.
From Our Blog
LATEST
CMT Research: Got a Birthday Coming up?
CMT Research: Got a Birthday Coming up? If your birthday falls between June and August, this message is for you. What if this year, your birthday did something bigger? Birthday wishes can become CMT breakthroughs. In just five minutes, you can set up a Facebook...
HNF to Host FDA Patient Listening Session for CMT-SORD
HNF to Host FDA Patient Listening Session for CMT-SORD The Hereditary Neuropathy Foundation is hosting an FDA Patient Listening Session for the CMT-SORD community. FDA Patient Listening Sessions give patients and caregivers a direct line to the agency. The FDA hears...
Thank You for an Incredible 2026 CMT Clinical Trial Readiness Summit
Thank you for being part of our 2026 CMT Summit, our biggest gathering yet, with over 200 attendees coming together to connect, learn, and inspire one another. We are grateful for each and every one of you who helped make this weekend truly special. We extend our...
Your Genetic Report Could Help Unlock the Next CMT Breakthrough
Your Genetic Report Could Help Unlock the Next CMT Breakthrough You may not be a scientist. But you have something researchers need. If you have a genetic report related to your CMT diagnosis, uploading it to GRIN, the Global Registry for Inherited Neuropathies, is...
ENCell’s EN001 Enters Phase 2a Trials for CMT1A
ENCell's EN001 Enters Phase 2a Trials for CMT1A A South Korean biotech company called ENCell just gave the first patient a dose of an experimental CMT treatment called EN001, kicking off a Phase 2a clinical trial. This is a big step forward: earlier trials focused on...
CMT and Mental Health: What the Data Is Telling Us This May
CMT and Mental Health: What the Data Is Telling Us This May May is Mental Health Awareness Month, and this year, HNF is using it as a moment to look honestly at something the CMT community has been living with for a long time: the emotional weight of this...
The 2026 CMT Summit: What We Built Together
The 2026 CMT Summit: What We Built Together Two days. One community that keeps growing. The numbers from this year's CMT Clinical Trial Readiness Summit tell a clear story. 96% of attendees rated their overall experience Excellent or Very Good. 93% said they would...
MDA Durable Medical Equipment (DME) Grant Program
MDA Durable Medical Equipment (DME) Grant Program If you are living with CMT and need help accessing essential mobility and daily living equipment, the Muscular Dystrophy Association (MDA) offers a Durable Medical Equipment (DME) Grant Program that may be able to...
Featured
CMT Research: Got a Birthday Coming up?
CMT Research: Got a Birthday Coming up? If your birthday falls between June and August, this message is for you. What if this year, your birthday did something bigger? Birthday wishes can become CMT breakthroughs. In just five minutes, you can set up a Facebook...
Thank You for an Incredible 2026 CMT Clinical Trial Readiness Summit
Thank you for being part of our 2026 CMT Summit, our biggest gathering yet, with over 200 attendees coming together to connect, learn, and inspire one another. We are grateful for each and every one of you who helped make this weekend truly special. We extend our...
The 2026 CMT Summit: What We Built Together
The 2026 CMT Summit: What We Built Together Two days. One community that keeps growing. The numbers from this year's CMT Clinical Trial Readiness Summit tell a clear story. 96% of attendees rated their overall experience Excellent or Very Good. 93% said they would...
HNF Driving Progress at the 2026 MDA Clinical & Scientific Conference
HNF Driving Progress at the 2026 MDA Clinical & Scientific Conference The Hereditary Neuropathy Foundation (HNF) had a strong presence at the 2026 MDA Clinical & Scientific Conference in Orlando last week, where more than 1,900 leaders across science,...
Featured Webinars
CMT Summit Patient Voices
At the 2025 CMT Summit and Retreat in Nashville, the Hereditary Neuropathy Foundation (HNF) placed patient and care partner voices front and center. Through powerful firsthand stories shared on stage and in intimate breakout sessions, attendees experienced the raw...
Webinar: Making Sense & Science of CMT Symptoms
How do we know if our symptoms are Charcot-Marie-Tooth Disease related, and how can we drive research to better answer this question?
CMT THRIVE Webinar – Cannabis & Neuropathy Webinar
Cannabis can be a safe and effective tool to reduce symptoms of neuropathy and improve patient quality of life.
Active Hands
Hear from Rob Smith, Inventor and Director of Active Hands and learn about these life-impacting products designed especially for people living with reduced hand function.
UPCOMING EVENTS
2026 CMT Biobank Dates and Cities Are Here
🩸2026 CMT Biobank Dates + Cities Are Here! The CMT Biobank continues to drive critical research forward — and we’re excited to announce our 2026 collection dates and cities. Are we coming to a city near you? HNF is seeking individuals with a CMT diagnosis to...
Run With Purpose. Give With Heart.
On November 5, 2023 – Runners will take on the marathon to support Charcot-Marie-Tooth Disease research.