The Neuromuscular Disease Network for Canada

funder-logos_nmd4c

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...

logos-treat-nmd-logo

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.

image001

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…

International DM day announced

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.

vaccine_stock

MDC Press Release | Muscular Dystrophy Canada calls on provincial governments to prioritize persons affected by neuromuscular disorders for COVID-19 vaccine

As the voice of the NMD community in Canada, Muscular Dystrophy Canada (MDC) is calling on governments to prioritize people living with hereditary and acquired neuromuscular disorders in their vaccination roll-out.

Ask the Experts COVID 19

Webinar, FAQ Report & Decision Aid | COVID-19 & Neuromuscular Disorders: Ask The Experts

Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) have received numerous questions about COVID-19 vaccines and how they may uniquely affect people with neuromuscular disorders (NMD). To address these questions and concerns, MDC & NMD4C assembled a diverse group of neuromuscular, virology, and policy experts to host a webinar with the…