Rare Disease Day Around the NMD4C Community

Rare Disease Day is an opportunity to bring together communities of researchers, health care providers and patients under a unified theme. As a network which serves a rare disease community, we wish to promote the NMD activities that will take place on Rare Disease Day. In 2021 there is more opportunity to attend and get involved than ever before due to the increasing frequency of remotely accessible and virtual events!

 

Here are some of the upcoming Rare Disease Day 2021 events within our network:

 

  • Jesse’s Journey will run a social media campaign throughout all February, profiling four families (one per week) for people to share and help raise awareness of Duchenne muscular dystrophy. Visit Jesse’s Journey’s website in the next weeks for more information.
  • The Canadian Organization for Rare Disease (CORD) will be encouraging the Duchenne community to attend their Conference in early March titled “From Draft to Action Plan on March 9-10, 2021 from 11am to 2pm EST.
  • The Groupe de recherche interdisciplinaire en maladies neuromusculaires (GRIMN) will host an regional French event on February 25th 2021 called “Rare et fréquent, c’est possible!” in collaboration with the Centre intersectoriel en santé durable (CISD), the CIUSSS du Saguenay-Lac-Saint-Jean and CORAMH in which a section will focus on neuromuscular diseases. Details will be published on the GRIMN facebook page :

 

Are you organizing a Rare Disease Day webinar, a conference, a workshop or any other activity that could be of interest to other NMD4C members? Send us information about your Rare Disease Day activities to the following address: . The network will be pleased to share the various activities of Rare Disease Day with our members.

 

Together we can show how the neuromuscular community is engaging in Rare Disease Day!

 

Return to the February 2021 Newsletter

rare disease day logo

Read next...

NEWS_Scheduled Website Maintenance

Scheduled Maintenance

Please note that this website, imPORTND, and the NNLS training platform will undergo maintenance from July 23 until July 27, 2026.

NMD4C Talent Pool

Discover Neuromuscular Talent Across Canada

The NMD4C Neuromuscular Talent Pool is now live with new trainees! We invite supervisors and research groups to explore the Talent Pool to identify candidates whose skills, experience, and interests align with your work and upcoming positions. Trainees interested in being included in the Neuromuscular Talent Pool can register by completing the short form, uploading a CV and brief personal statement outlining their experience, interests, and career goals. For more information and to access the Talent Pool, please visit our website.

2026 NMD4C Annual Meeting Registration is Open

Join Us at the 2026 NMD4C Annual Meeting on 25 September

The 2026 NMD4C Annual Meeting will take place in Calgary on Friday, September 25, 2026. The agenda will feature a brief network update, trainee and early-career recognitions, flash talks, a health economics research showcase, and a series of cross‑disciplinary and parallel clinical/pre‑clinical discussion sessions to explore key topics, including advocacy and therapy access, strategies to sustain and strengthen pre-clinical programs, and network sustainability and strategic planning.