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!