Driving
CMT Research
with the
Patient’s Voice
With your help support love
nothing is impossible!
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Drive Research
Turn your symptoms into science
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Join Team CMT
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Research CMT
Research CMT
HNF has been conducting patient-focused research dating back to 2007.
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Gift a Birthday
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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
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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.
LATEST
2024 CMT Roadshow Coming to a City Near You?
Do you want to make a difference in CMT research? HNF is looking for patients with a confirmed CMT diagnosis to participate in the CMT Biobank
Cannabis & CMT Webinar
Angie Roullier is the author of “Pot for the People: The plant, the people, and the shop policies of cannabis” – Cannabis Tutor/Patient Relations
Unstoppable Skyler Fisher: Triumphing Across Continents with CMT
In the fast-paced world of para triathlons, one name stands out among the rest: Skyler Fisher, a dynamic 19-year-old powerhouse representing Team USA.
Breaking News for SORD Deficiency Patients
The INSPIRE trial is a Phase 3 double-blind placebo-controlled registrational study evaluating the effect of once-daily (QD) oral govorestat (AT-007) in 56 patients aged 16-55 with SORD Deficiency in the US and Europe.
HNF Contributes CMTRN Data to C-Path’s RDCA-DAP
HNF Contributes CMTRN Data to C-Path’s RDCA-DAP, Strengthening Research Capabilities for Inherited Neuropathies Integration of CMTRN data into RDCA-DAP promises new insights into Charcot-Marie-Tooth disease and related neuropathies, fueling advancements in treatment...
New CMT gene discovery, CRYAB
Do you have late onset autosomal dominant CMT2 – subtype unknown, with breathing involvement, unexplained cardiac complications, and/or congenital cataracts?
HNF’s CMT Genie: Because genetic testing for CMT has never been more critical
Collaborative efforts between researchers, healthcare providers, and patients, facilitated by the Hereditary Neuropathy Foundation, has created a synergy that has accelerated the pace of discovery.
Breaking News: HNF to Host “Revolutionizing Clinical Trials” Panel at Bio 2024
HNF is thrilled to announce that we have been accepted to host a 1-hour panel discussion during the Bio International Convention in San Diego, CA, in June 2024.
Featured
Unstoppable Skyler Fisher: Triumphing Across Continents with CMT
In the fast-paced world of para triathlons, one name stands out among the rest: Skyler Fisher, a dynamic 19-year-old powerhouse representing Team USA.
HNF Contributes CMTRN Data to C-Path’s RDCA-DAP
HNF Contributes CMTRN Data to C-Path’s RDCA-DAP, Strengthening Research Capabilities for Inherited Neuropathies Integration of CMTRN data into RDCA-DAP promises new insights into Charcot-Marie-Tooth disease and related neuropathies, fueling advancements in treatment...
Breaking News: HNF to Host “Revolutionizing Clinical Trials” Panel at Bio 2024
HNF is thrilled to announce that we have been accepted to host a 1-hour panel discussion during the Bio International Convention in San Diego, CA, in June 2024.
HNF Launches Groundbreaking ‘ABCs of CMT Pain Management’ Guide
"ABCs of CMT Pain Management" is now on Amazon! The Hereditary Neuropathy Foundation is thrilled to introduce the "ABCs of CMT Pain Management," a comprehensive guide. This guide embodies the power of collective stories through patient-reported data and an unwavering...
Featured Webinars
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.
CMT-Connect Pain Webinar
New CMT-Connect Webinar Pain Series will focus on a particular type of pain, its common causes, available treatments and future treatments on the horizon.
UPCOMING EVENTS
2024 CMT Roadshow Coming to a City Near You?
Do you want to make a difference in CMT research? HNF is looking for patients with a confirmed CMT diagnosis to participate in the CMT Biobank
Cannabis & CMT Webinar
Angie Roullier is the author of “Pot for the People: The plant, the people, and the shop policies of cannabis” – Cannabis Tutor/Patient Relations
Virtual Chair Yoga, Healthy Heart & Backs to the Mat
Virtual Chair Yoga, Healthy Heart & Backs to the Mat
TD Bank Five Boro Bike Tour
HNF is thrilled to have been chosen for the 14th year as a Charity Partner for the TD Bank Five Boro Bike Tour.