News

November 20, 2020November 18, 2020

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

News, syndicated

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about ... Read more

November 17, 2020November 17, 2020

Drug Screen Finds Dozens of Potential Therapeutic Compounds for CMT2A

News

AcuraStem has identified 37 compounds that improve nerve cell survival and might help treat Charcot-Marie-Tooth disease type 2A (CMT2A), according to a press release from the CMT Research Foundation. CMT2 ... Read more

November 13, 2020

Survey: Restricted Physical Activity Affected CMT Patients During COVID-19 Lockdowns

News

As a result of significant reductions in walking and physical therapy, people with Charcot-Marie-Tooth (CMT) disease reported worsening physical skills and pain scores after the COVID-19 lockdowns, a recent ... Read more

November 10, 2020November 10, 2020

App-based Study Seeks Real-world Data on the Personal Impact of CMT

News

An international observational study using a smartphone-based app called CMT&Me is exploring the impact of Charcot-Marie-Tooth disease (CMT) on patients and caregivers. The study (NCT03782883) was designed by Vitaccess in collaboration ... Read more

November 6, 2020November 3, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit ... Read more

November 3, 2020November 3, 2020

Functional Surgery Can Improve Walking Ability in People With CMT, Study Finds

News

Functional surgery can improve walking ability in people with Charcot-Marie-Tooth disease (CMT), and patients are generally satisfied with the outcomes, a study indicates. The study, “Long‐term walking ability and ... Read more

October 30, 2020October 30, 2020

CMT Research Foundation to Develop Precision Medicine Approach for Subtypes

News

The CMT Research Foundation has launched a new research program that will seek to develop a precision medicine approach to treat people with Charcot-Marie-Tooth (CMT) disease, the foundation announced ... Read more

October 27, 2020October 28, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

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A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar ... Read more

October 23, 2020October 23, 2020

CMT UK Offering Video Series of Exercises for Home Use

News

To promote physical activity in people with Charcot-Marie-Tooth (CMT) disease, the charity CMT UK shared seven exercise videos that patients can carry out in the comfort of their home. The ... Read more

October 20, 2020October 20, 2020

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

News, syndicated

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a ... Read more