Muscular Dystrophy Canada Rare Disease Day Update

Rare Disease Day, which occurs on the last day of February (Feb 28th, 2021), is meant to raise awareness amongst the general public and decision-makers about rare diseases and their impact on individuals’ lives. This year, Rare Disease Day will look a little different around the world as we connect virtually instead of in person due to the ongoing COVID-19 pandemic. 

 

Considering many neuromuscular conditions are considered rare, and even ultra-rare, Muscular Dystrophy Canada (MDC) will be featuring individuals with lived experience with varying neuromuscular disorders. 

 

In the week leading up to Rare Disease Day, each day MDC will spotlight a client and their response to the question: how has it been living with a NMD in the midst of the COVID-19 pandemic? These personal stories will showcase the diversified impact of the pandemic on the quality of lives of individuals affected by neuromuscular conditions and reveal individuals’ experiences with interrupted care, increased social isolation/fatigue, frequent cancellation or postponement of treatments and clinic visits, allied health and primary care or specialist appointments, and interrupted rehabilitation and home care supports. 

 

The stories will also highlight 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. In addition to the personal stories, to increase awareness and knowledge of NMDs, there will be a short plain-language descriptions of the following groups that fall within MDC’s umbrella: 

 

(1)  Muscular Dystrophies 

(2)  Congenital Muscular Dystrophies

(3)  Congenital Myopathies

(4)  Auto-immune Mediated Myopathies

(5)  Metabolic Myopathies

(6)  Genetic and Immune-Mediated Neuromuscular Junction Disorders

(7)  Hereditary Peripheral Nerve Disorders (Genetic Neuropathies)

(8)  Immune-Mediated Peripheral Nerve Disorders

(9)  SMA and related Disorders

 

For more information about Rare Disease Day, please email

 

Return to the February 2021 Newsletter

MDClogo_colour

Read next...

AGAMREE (vamorolone) Approved treatment for DMD in Canada

A Milestone in Neuromuscular Care: AGAMREE® (vamorolone) Approved as the First Treatment for Duchenne Muscular Dystrophy in Canada

Health Canada has approved AGAMREE® (vamorolone), the first-ever treatment for Duchenne Muscular Dystrophy (DMD) in Canada. Patient Support Program opens for enrollment on October 10, 2025.

Website - SBMA published on CMAJ.png

New Best Practice Recommendations for SBMA Care in Canada

Congratulations to Dr. Kerri Schellenberg, the team of Canadian experts, NMD4C Steering Committee members and Investigators, on publishing the first Canadian SBMA care guidelines!

2025 NMD4C ANNUAL MEETING

Advancing Neuromuscular Research and Care: Highlights from the 2025 NMD4C Annual Meeting

On September 11, NMD4C hosted its 2025 Annual Meeting in Ottawa, bringing together clinicians, researchers, trainees, and partners for a full day of collaboration, strategic dialogue, and community-building.

2025 Clinical Summer School

NMD4C Hosts Inaugural Clinical Summer School to Empower Canada’s Future Neuromuscular Leaders

On September 10–11, NMD4C hosted its inaugural Clinical Summer School in Ottawa, bringing together 19 neuromuscular clinical fellows from across Canada for two days of hands-on training, mentorship, and networking. Led by national experts and co-chaired by Drs. Gordon Jewitt and Marianne Nury, the program complemented NMD4C’s accredited lecture series and fostered peer connection through dedicated community-building sessions.

2026 Neuromuscular Postdoc Research Fellowship Competition

2026 Neuromuscular Postdoctoral Research Fellowships Funding Competition is Now Open!

Apply Or Share this opportunity with the trainees in your network — Deadline: October 14, 2025. Hosted by Neuromuscular Disease Network for Canada (NMD4C) and Muscular Dystrophy Canada (MDC)

Clinical Fellowship Awardees

Announcing the 2026 Neuromuscular Clinical Fellowship Award Recipients

We are excited to share that the 2026 Neuromuscular Clinical Fellowship Awards have been awarded! These fellowships strengthen clinical training in neuromuscular medicine and help prepare the next generation of specialists who will advance neuromuscular care across Canada.