Updates

March 5, 2021March 5, 2021
Foundation Supports Promising Preclinical Work in CMT

The Hereditary Neuropathy Foundation is supporting preclinical work focused on mutations in the CNTNAP1 gene, which were linked previously to symptoms of Charcot-Marie-Tooth (CMT) disease, it ... Read more
March 2, 2021February 26, 2021
Even When I’m Fatigued and Unproductive, I’m Not Useless

Standing outside a chicken hatchery, a man smokes a cigarette while watching his young son play. He and his wife are new to town ... Read more
March 2, 2021March 2, 2021
CMT Prevalence in Denmark May Be 16% Higher Than Estimates

The true prevalence of Charcot-Marie-Tooth disease (CMT) in Denmark may be higher than previously thought, according to a recent Danish study in which researchers ... Read more
February 26, 2021February 26, 2021
Funding Supports Pharnext’s Phase 3 Trial of PXT3003

Pharnext has received €11 million ($13.3 million) in funding to support a Phase 3 trial investigating its investigational therapy PXT3003 for the treatment of ... Read more
February 25, 2021February 25, 2021
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from ... Read more

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September 22, 2017September 22, 2017

Despite Functional Limitations, Few CMT Patients Receive Physical and Occupational Therapy

News

Most people with Charcot-Marie-Tooth (CMT) disease do not receive physical or occupational therapy, despite having extensive problems with physical functioning that limit mobility and quality of life, according to a report presented at the American Association of Neuromuscular & ... Read more

Updates

Foundation Supports Promising Preclinical Work in CMT

Even When I’m Fatigued and Unproductive, I’m Not Useless

CMT Prevalence in Denmark May Be 16% Higher Than Estimates

Funding Supports Pharnext’s Phase 3 Trial of PXT3003

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

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Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day Reminds Me of the Importance of Community

More Research Needed into Effects of Exercise on CMT Patients, Review Says

Gene Therapy Seen to Rescue Motor, Nerve Defects in CMTX1 Mouse Model

CMT Research Foundation Funds Work Into Way of Delivering Gene Therapy

Mutations in LRSAM1 Gene Tied to Rare CMT Subtype

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Pivotal CMT1A Trial to Begin Patient Enrollment Soon

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

Green Tea Compound Led to Improvements in CMT2 Case Study

Mitochondrial Gene Mutation Linked to CMT in Large Venezuelan Family

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

Getting a Handle on Emotional Eating Caused by Stress and Anxiety

New Virtual Fitness Program Offers Free Live Classes for All Levels

Research Ongoing Into Newly Identified Subtype Tied to SORD Gene

NORD’s Caregiver Respite Program Continues Through Pandemic

What I’ve Learned From Beach Trips and My Wobbly Time on the Sand

NfL Shows Potential as CMT Biomarker, But More Work Needed

DI-CMT Type B Mouse Model Reveals Features of Muscle Damage

When It Comes to Shoes, I’m Putting Accessibility Before Fashion

Pregnancy Can Worsen CMT Symptoms With Outcomes Unaffected, Italian Study Finds

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

Common Pathway Malfunction Found to Underlie CMT Subtypes 1C, 4J

A Toast to the Good Things in a Difficult Year

Despite Functional Limitations, Few CMT Patients Receive Physical and Occupational Therapy