The Neuromuscular Disease Network for Canada


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 organizations like MDC from sharing stories on social media platforms, participating in academic and community discussions, and holding virtual campaigns to “recognize rare.” In the days leading up to Rare Disease Day, MDC celebrated by bringing awareness to different groups of neuromuscular disorders. MDC also shared powerful stories of on how children and adults are managing their rare disease during the COVID-19 pandemic.

The stories highlighted the resilience of individuals and their families, the benefits of virtual tele-care and programs for those with mobility challenges and the positive lessons the pandemic has offered.

Click here if you missed the stories!


Rare Disease Day also served as a great opportunity to share exciting announcements, like:

    • The declaration of International Myotonic Dystrophy Day as September 15, 2021. This day is a collaboration of dozens of myotonic dystrophy groups and organisations from around the globe – each dedicated to helping raise awareness of the condition in their local geographies on September 15, 2021 and beyond. The NMD4C & MDC are proud to be a part of this global alliance in declaring September 15th International Myotonic Dystrophy Awareness Day!



  • The results of the European Joint Programme for Rare Diseases (EJP RD) JTC 2020 call on pre-clinical research were announced. ProDGNE, a project which will unify European and Canadian (Dr. Hanns Lochmuller) efforts to develop an innovate therapeutic approach for GNE myopathy, an ultra-rare muscle disease, obtained co-funding under the EJP RD JTC 2020 call on pre-clinical research.



  • MDC has been in partnership with CIHR in the EJP RD competition since 2013. This year, MDC together with CIHR will support the FSHD (EPiTHE4FSHD) (Facioscapulohumeral muscular dystrophy) study (Dr. Rima Al-Awar), which aims to use cellular and animal models of FSHD to investigate a novel pharmacological approach that could represent a promising therapeutic option for patients.


Rare Disease Day also helped bring the neuromuscular community up in media. Muscular Dystrophy Canada and Jesse’s Journey were pleased be part of a 2021 Rare Disease Day initiative called Canada’s Rare Voices. This is an online program, the largest of its kind in recent memory, devoted entirely to increasing the visibility of Canada’s rare disorder communities. MDC was featured in a story about the power of partnerships – teaming up to take on neuromuscular disorders.

Please check out the article here!


Read next...

Fellowship Map_news

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.

image from

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.

medicine capsules spilling out of a jar

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.


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.


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!

ENMC logo topkwaliteit

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.