The Neuromuscular Disease Network for Canada

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MDC Press Release | Muscular Dystrophy Canada Awarded Imagine Canada Accreditation

The NMD4C are pleased to celebrate the recent Imagine Canada national accreditation awarded to one of our partners Muscular Dystrophy Canada.

The Imagine Canada Standards Program is awarded in recognition of excellence in the non-profit field. To earn the accreditation, an organization must meet 73 standards in financial management and accountability, fundraising practise, board governance, staff management, and volunteer management.

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.

Read MDC’s press release about the accreditation here!

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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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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.

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Rare Disease Day 2021 Recap

Observed annually on the last day of February, Rare Disease Day seeks to raise awareness among the general public, as well as policymakers, public authorities, industry representatives, scientists, and health professionals.   Due to the COVID-19 pandemic, activities this year were mainly virtual. But that did not stop patients, caregivers, researchers, clinicians, advocates and patient…