Driving
CMT Research
with the
Patient’s Voice
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nothing is impossible!
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Drive Research
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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.
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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.
From Our Blog
LATEST
HNF Recibió 2023 Health Equity en RARE Impact Grant
¡La Fundación de Neuropatía Hereditaria se complace en anunciar que hemos recibido la Beca de Impacto de Equidad en Salud en RARE! La subvención financiará la campaña "No Camines Solo/Don't Walk Alone", una campaña de concienciación de CMT PSA en español con...
CMT Research Update: Pediatric Ankle And Gait Function
HNF TRIAD Academic Partner Connecticut Children’s Publishes Results of CMT Pediatric Natural History Study to Better Understand Ankle Function and Gait HNF-funded research sought to determine how age and CMT type affect ankle strength in children. A detailed...
HNF Awarded 2023 Health Equity in RARE Impact Grant
HNF Awarded 2023 Health Equity in RARE Impact Grant For Spanish CMT PSA Awareness Campaign with Diagnosis & Patient Care Toolkit. The Hereditary Neuropathy Foundation is thrilled to announce that we are a recipient of the Global Genes Health Equity in RARE Impact Grant!
HNF & Kenneth Raymond Join Forces to Clarify CMT Genetic Reports
HNF & Kenneth Raymond Join Forces to Clarify CMT Genetic Reports Since the launch of HNF’s CMT Genie last August, over 200 participants have participated in hopes of receiving a genetic confirmation of their CMT symptoms. Although many have found a definitive...
Cambridge-led natural history study identifies MTRFR/C12orf65 deficiency to improve diagnosis and therapy development
This research will potentially show a method that may be quicker and better at identifying baseline disease phenotypes to support research and clinical trials. Cambridge-led retrospective natural history study funded by the Hereditary Neuropathy Foundation identifies...
Hereditary Neuropathy Foundation Re-Launches One-of-A-Kind Patient Registry for Charcot-Marie-Tooth Disease Research
Hereditary Neuropathy Foundation Re-Launches One-of-A-Kind Patient Registry for Charcot-Marie-Tooth Disease Research This user-friendly platform allows patients, caregivers, clinicians, and researchers the ability to manage health data to elevate CMT patient care. The...
CMT-Associated Genes and Their Related Subtypes: The Definitive Guide
Kenneth’s groundbreaking book, CMT-Associated Genes and Their Related Subtypes: The Definitive Guide, is available as a free eBook soon to be added to the HNF site.This guide represents a comprehensive accounting of the identified subtypes and a comprehensive...
Charcot-Marie-Tooth Virtual Support Group
The support group offers time to participate in a variety of both educations & open discussion meant to help everyone engage with others on similar journeys.
Featured
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?
She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe
She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe In 2016, Jenny kayaked around the Big Island to raise money for HNF’s Therapeutic Research in Accelerated Discovery (TRIAD) research program and to spread awareness for Charcot-Marie-Tooth...
Hereditary Neuropathy Foundation Launches New Website and Webinar to Support Charcot-Marie-Tooth Disease Research
HNF’s website provides CMT community, academia, and biotech industry a hub for exploring research, clinical trials, vital resources, and ways to get involved.
SORD Webinar – Part 2 – Clinical Trial Update
Clinical Trial Update for SORD Deficiency – Applied Therapeutics – Dr. Shoshana Shendelman
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
TCS New York City Marathon
On November 5, 2023 – Runners will take on the marathon to support Charcot-Marie-Tooth Disease research.