CMT Meet-Up September 30th at 1pm ET

by Courtney | Sep 7, 2023 | 0 comments

Meet virtually with host, Julie Stone & fellow CMTers from all over the world for a fun and interactive chat about all things CMT. Connect with valuable resources, experiences, tips, and new friendships! This will be a private and safe event (not recorded). Each CMT Meet-Up will focus on a topic that matters most to our community. For our first Meet-Up, we’ll be discussing CMT-related pain.

Register Here

Learn more on this topic

Pediatric CMT Natural History Study Enrollment Opening at Two Centers of Excellence

by Courtney | Aug 31, 2023 | Centers of Excellence, Clinical Trials, Featured, GRIN Patient Registry, Living with CMT, Pediatrics & CMT, Registry, Research, Research and Critical Trials | 0 Comments

Pediatric CMT Natural History Study enhancement to their Charcot-Marie-Tooth (CMT) and Inherited Neuropathies (IN) patient registry, Global Registry for Inherited Neuropathies (GRIN).

HNF & Kenneth Raymond Join Forces to Clarify CMT Genetic Reports

by Courtney | Jun 13, 2023 | Genetic Testing, GRIN Patient Registry, Living with CMT, Newly Diagnosed | 0 Comments

Over 200 individuals have participated in hopes of receiving a genetic confirmation of their CMT symptoms. Although many have found a definitive diagnosis, many others have received their results as a variant of uncertain significance (VUS)

HNF Awarded 2023 Health Equity in RARE Impact Grant

by Courtney | May 15, 2023 | Living with CMT, Registry | 0 Comments

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!

CMT-Associated Genes and Their Related Subtypes: The Definitive Guide

by Courtney | Apr 6, 2023 | Genetic Testing, Living with CMT, Newly Diagnosed | 0 Comments

Kenneth’s groundbreaking book, CMT-Associated Genes and Their Related Subtypes: The Definitive...

Charcot-Marie-Tooth Virtual Support Group

by Courtney | Mar 31, 2023 | Emotional and Mental Health, Living with CMT | 0 Comments

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.

CMT Beyond Social Media: What is CMT Safe Space!

by Courtney | Mar 14, 2023 | Inspire Community, Living with CMT | 0 Comments

When searching for support and answers to CMT questions, social media can be very beneficial....

Charcot–Marie–Tooth Disease Symptoms

by Courtney | Mar 7, 2023 | Awareness, Living with CMT, Newly Diagnosed, Webinars - Newly Diagnosed | 0 Comments

Charcot-Marie-Tooth disease is one of several hereditary neuropathies that affect the peripheral nervous system. CMT affects about 1 in every 2,500 people, making it one of the most common inherited neurological disorders worldwide.

She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe

by Courtney | Feb 23, 2023 | Faces of CMT, Featured, Living with CMT | 0 Comments

She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe In 2016, Jenny kayaked...

The Key Role CMT Patients Play in Research

by Courtney | Sep 16, 2022 | GRIN Patient Registry, Living with CMT, Research and Critical Trials, Webinars - Research and Clinical Trials | 0 Comments

Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.

Moving Away From Perfectionism

by Estela Lugo | Jun 8, 2022 | Living with CMT | 0 Comments

The American Psychological Association (APA) understands perfectionism as the tendency to expect flawless performance from others or oneself over what the situation requires.

WHAT IS CMT

TYPES OF CMT

PATIENT RESOURCES

CMT UPDATES

CMT CONNECT

CMT Research

TRIAD

GRIN PATIENT REGISTRY

PEDIATRICS & CMT

WHAT IS MITO

TYPES OF MITOS

MITO Faces

MITO Research

TRIAD - Mito

GRIN PATIENT REGISTRY

PEDIATRICS & MITO CMT

FDA

CLINICAL TRIALS

PATIENT-FOCUSED RESEARCH

EMERGING TECHNOLOGIES

GENETIC TESTING - CMT GENIE

MOVEMENT IS MEDICINE™

FACES OF CMT

INDUSTRY

HCPs/CENTERS OF EXCELLENCE

RESEARCH FUNDING

About HNF

OUR STORY

FOUNDATION LEADERSHIP

990's & ANNUAL REPORTS

Join Team CMT

Ways to Give

Amazon Wishlist

CMT Shop

GRIN Registry

Facebook Fundraiser

Celebrate your birthday with a purpose

Participate or Host an event

Make A Donation Today

Click here if the donation form does not display below.

CMT Meet-Up September 30th at 1pm ET

Learn more on this topic

Related Blog Posts

Join the conversation

Leave a Comment

0 Comments

Submit a Comment Cancel reply

Newsletter

Join for notifications on events, campaigns, & news

Success!