The Neuromuscular Disease Network for Canada

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International Myotonic Dystrophy Awareness Day Declared for September 15, 2021

The NMD4C are proud to be a part of a global alliance of myotonic dystrophy-focused organisations who in honour of Rare Disease Day 2021 have united to announce the declaration of International Myotonic Dystrophy Awareness Day to be observed each September 15th.

 

Raising awareness of myotonic dystrophy (DM) is critical as it is a rare, multi-systemic, progressive, inherited disease that affects successive family generations but is often misdiagnosed and poorly supported. Myotonic dystrophy is the most common form of adult muscular dystrophy and considered the most variable of all known conditions, yet there is currently no cure and there are no approved treatments.

 

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International DM day announced

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Clinical Research Curriculum Development Working Group Update

The NMD4C is committed to educating the next generation of NMD stakeholders, and endeavors to optimize the training of neuromuscular clinicians in Canada through standardization of a fellowship curriculum, preparing an application for an Area of Focused Competency (AFC) by the Royal College of Physicians and Surgeons of Canada in the field of Neuromuscular Medicine, and holding quarterly CPD-accredited NM Mystery Case Rounds.

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Expert Patient Capacity Building Update

The NMD4C is involved in several activities under the provision of our Training and Education initiatives, including the establishment of expert patient capacity building (EPCB) resources for Canadian NMD patients. The EPCB team’s work involves the promotion of patient engagement in all aspects of NMD, and the development of easy-to-use and accessible Canadian NMD training modules and resources for both patients and researchers to support patient-oriented neuromuscular research in Canada.

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Response to the Federal Government on Building a National Strategy for High-Cost Drugs for Rare Diseases

The Neuromuscular Disease Network for Canada (NMD4C) in partnership with Muscular Dystrophy Canada (MDC)  and The Foundation for Gene & Cell Therapy (Jesse’s Journey) are pleased to provide the following summary of our recommendations for consideration into the National Strategy for Rare Diseases.

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MDC Press Release | Muscular Dystrophy Canada Awarded Imagine Canada Accreditation

This prestigious accreditation is an official complement to the extraordinary scope of work MDC does to support the neuromuscular community, influence positive change with advocacy and fund basic and translational research in the field of NMD.

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NMD4C steering committee member Dr. Jim Dowling appointed Chair of the executive committee of TREAT-NMD

The NMD4C would like to congratulate our Steering Committee member Dr. Jim Dowling on his appointment as Chair of the executive committee of TREAT-NMD!

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Launch of ENMC Mid-Career Mentoring Programme

Building from the success of the ENMC Early-Career Programme, the ENMC is proud to launch a new and ambitious Mid-Career Mentoring Programme.