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.

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Unstoppable Skyler Fisher: Triumphing Across Continents with CMT

by Courtney | Feb 27, 2024 | Featured, Living with CMT, Team CMT Members | 0 Comments

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 Launches Groundbreaking ‘ABCs of CMT Pain Management’ Guide

by Courtney | Jan 19, 2024 | Featured, Living with CMT, Pain, Pediatrics & CMT, Webinars - Pain | 0 Comments

"ABCs of CMT Pain Management" is now on Amazon! The Hereditary Neuropathy Foundation is thrilled...

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 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.

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CMT Meet-Up September 30th at 1pm ET

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