The Neuromuscular Disease Network for Canada

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NMD4C Monthly Newsletter

August 2021 Newsletter

We share a new publication Guidance on gene replacement therapy in Spinal Muscular Atrophy: a Canadian perspective, and launch the new clinical trial concierge web page. We also share news about a new EPIC functionality helping to keep myotonic dystrophy patients safe at The Ottawa Hospital, the ENMC’s new Themed workshops, Knowledge Translation updates, a 2021 Walk4MD wrap-up & more!

July 2021 Newsletter

We share a new publication Guidance on gene replacement therapy in Spinal Muscular Atrophy: a Canadian perspective, and launch the new clinical trial concierge web page. We also share news about a new EPIC functionality helping to keep myotonic dystrophy patients safe at The Ottawa Hospital, the ENMC’s new Themed workshops, Knowledge Translation updates, a 2021 Walk4MD wrap-up & more!

June 2021 Newsletter

We give updates from our Early Career working group, grant funding announcements from our partners, and a newborn screening announcement from MDC! Also check out our next webinar, a member spotlight on investigator Dr. Lawrence Korngut and events from around the community.

May 2021 Newsletter

We give updates from our Biobanking working group including a list of Canadian neuromuscular biobanks, an introduction to the new clinical trial coordinator Bonnie Wooten, details about a Canadian Congenital Myotonic Dystrophy trial, a statement in response to high cost drugs for RD, and announce an event in partnership with Jesse’s Journey & MDC!

April 2021 Newsletter

We give updates from our Expert Patient Capacity Building working group and the Clinical Research Curriculum Development working group including a list of Canadian Neuromuscular Fellowships, a statement in response to high cost drugs for RD, and announce an event in partnership with Jesse’s Journey & MDC!

March 2021 Newsletter

We explore the birth of the ENMC Mid-Career Mentoring program, have a recap of the announcements and campaigns from Rare Disease Day 2021, and share our recent COVID-19 & Neuromuscular Disorders Ask the Experts documents!

February 2021 Newsletter

Update from MDC on their Rare Disease Day plans for 2021, Rare Disease Day events from around the NMD community, and the introduction of the new Opportunities Page on the NMD4C site.

January 2021 Newsletter

NMD4C’s plans for the year, an annual update from Jesse’s Journey, and new research from NMD4C participants.

December 2020 Newsletter

Update from the Canadian Biobanking landscape, an update from our clinical curriculum development, and NMD4C’s Annual Investigator Meeting.

November 2020 Newsletter

Introduction to NMD4C’s new communications coordinator, what KT services and consulting you would like the NMD4C to offer, and MDC’s upcoming virtual neuromuscular conference