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LEARNMD is the NMD4C’s online educational platform, offering expert talks and sessions on a wide range of neuromuscular topics. Since its launch in fall 2024 we have been working continuously to make new talks and content available for our members. We're excited to share what's new on LEARNMD!
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New educational talks and resources are now available from the following: - Educational webinars from our partners at the European Reference Network – Neuromuscular Diseases
- NMD4C National Neuromuscular Lecture Series webinars
- NMD4C Multi-Disciplinary Care of NMDs webinars
- Monthly NMD4C Educational Webinars
We hope that you take advantage of these training and learning resources on LEARNMD. The platform is available for free to all clinicians and researchers who are members of the NMD4C. Instructions on how to create your LEARNMD account are available here!
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Québec Clinican Network Joins NMD4C as Community of Practice Sub-Group | |
We are thrilled to announce that the Réseau Québécoise de l'Amyotrophie Spinale (RQAS), a network uniting rehabilitation clinicians across Quebec to advance the care of people with SMA since 2022, has officially become a sub-group Community of Practice of the NMD4C. Incorporating RQAS into NMD4C means we are able to expand our ability to unify, support, and advance neuromuscular care and research across Canada. We look forward to working together to drive innovation and improve outcomes for individuals with neuromuscular disorders. | |
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Muscular Dystrophy Canada Launches Initiative to Improve Genetic Testing Access for Myotonic Dystrophy |
MDC is thrilled to launch an innovative initiative designed to tackle the diagnostic hurdles experienced by individuals with myotonic dystrophy. This transformative, year-long project will offer no-cost genetic testing to those with suspected myotonic dystrophy, providing a critical pathway to earlier and more accurate diagnoses. Alongside genetic testing, MDC will also provide access to post-test genetic counseling, empowering individuals to better understand their results and make informed decisions about their health and future clinical care. Learn more about this exciting project! | | | |
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Neuromuscular Mystery Rounds (CPD Accredited) 🗓️ TODAY February 4, 2025 ⏰ 7pm ET
Speaker: Dr Béatrice Soucy, Neuromuscular Fellow, University of Calgary Title: Painfully obvious? A case of upper extremity dysfunction in ALS | | | |
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Physiatry Community of Practice Sharing Session | |
🗓️ Tuesday February 4, 2025, ⏰ 7pm ET | |
The next sharing session of the Physiatry Community of Practice will discuss a novel AI application that has been used to screen electronic records and identify potential symptom clusters in ALS patients. The experts on this technology and chairs of this sharing session are Dr Amanda Fiander and Dr Angela Genge. Please contact Dr Maria Masnata if you would like to attend. | | | |
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Patient Partner Perspectives on Barriers and Facilitators to Patient Engagement in Research 📅 Wednesday February 5, 2025 ⏰ 5:30-7:00 PM EST
Speakers: Francine Buchanan, Alex Haagaard and Jim Mann Moderator: Linda Niksic Audience: The priority audience is other patient partners across different levels of expertise but all members of the research team are invited to attend. This webinar series is disease agnostic, meaning the topics will not be specific to any particular disease or body system. | |
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EURO-NMD Dysimmune and Inflammatory Neuropathies Webinar Series 🗓️ February 6, 2025 - March 27, 2025 ⏰10am ET | | | |
The ERN EURO-NMD Working Group on Peripheral Nerve Diseases is pleased to present a Webinar series dedicated to Dysimmune and inflammatory neuropathies. This seven-episode series brings together clinicians, researchers, and patients to discuss a range of neuropathies and address key topics, including (but not limited to) challenges in diagnosis, advances in treatment, guidelines, emerging biomarkers, electrodiagnostic patterns, and the role of imaging in clinical practice.
Episode 3: Thursday February 6, 2025
Topic: Diagnosis and Treatment of Nodopathies Speaker: Dr Luis Querol |(Hospital de la Santa Creu i Sant Pau – Barcelona, Spain) Register here
Episode 4: Thursday, 13 February 2025 Topic: Multifocal motor neuropathy (MMN): diagnosis, treatment and update on biomarkers Speakers: Prof. Thomas Harbo (Aarhus University, Denmark) & Dr. Emilien Delmont (AP-HM Hôpital de la Timone, Marseille, France) Register here
Episode 5: Thursday, 20 February 2025 Topic: Electrodiagnostic patterns in immune-mediated neuropathies Speaker: Prof. Peter Van den Bergh (Cliniques universitaires Saint-Luc, Brussels, Belgium) Register here
Episode 6: Thursday, 20 March 2025 Topic: Peripheral Nerve Imaging with Focus on Inflammatory Neuropathies Speakers: Prof. Nens van Alfen (Radboud University Medical Center, Nijmegen, the Netherlands) Dr. H. Stephan Goedee (University Medical Center, Utrecht, the Netherlands) Register here
Episode 7: Thursday, 27 March 2025 Topic: Navigating Life with Dysimmune and Inflammatory Neuropathies: Q&A Session on Quality of Life and Management Speakers: Dr. Filip Eftimov (University Medical Center of Amsterdam, the Netherlands) & Jean-Philippe Plançon (French Association against Peripheral Neuropathies, France) Register here | |
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Physiotherapy and Occupational Therapy Community of Practice Sharing Session | |
🗓️ Thursday February 20, 2025 ⏰ 2pm ET
Title: Respiratory Therapy and Rehabilitation | | | |
The next sharing session of the Physiotherapy and Occupational Therapy Community of Practice will discuss Respiratory Therapy and Rehabilitation. The chair of this session is Elie Fiogbe. Please contact Dr Maria Masnata if you would like to attend! | |
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📢 Calling all neuromuscular research trainees interested in learning about patient engagement in research! Neuromuscular research trainees are invited to attend the trainee-led event “Building Bridges: Bridging Science and Patients”, a two-part series supported by the NMD4C connecting researchers and patient communities in neuromuscular research. This series begins with a virtual session on February 20, 2025, followed by an in-person event in Ottawa on April 28, 2025.
At the upcoming virtual session, attendees will have the chance to attend interactive breakout sessions and listen to talks from keynote speakers with a wide array of experience in patient engagement in research. Trainees will be empowered to develop crucial communication skills while fostering genuine connections with the patient community. See the full event details and register here! | |
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CIHR Research Impact and Open Science Virtual Event | |
🗓️ Panel date: March 20, 2025 ✨ Application deadline: February 24, 2025
The half-day CIHR-IMHA Research Impact and Open Science virtual session aims to foster a deeper understanding of Research Impact and Open Science principles and best practices for researchers. Expert panelists will provide foundational ‘101’ information on Research Impact and Open Science and share effective strategies for their application within the research continuum. This will be followed by a series of research presentations (an open call for abstract submissions is now live!)
This half-day session is intended for trainees, postdocs, patient partners and early career researchers; however, all members of the research team are welcome. Learn more about the event here! | | | |
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RareKids-CAN Roundup: Overview, Updates, and Collaboration 🗓️ March 24, 2025 ⏰8-11am MST / 10am-1pm ET | |
Save the date! RareKids-CAN is inviting you to join their virtual roundup session on March 24, 2025 from 8-11am MST. During this information session, you will gain an overview of RareKids-CAN, build connections within the community, share you feedback on the network, and more. Register today! | |
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TREAT-NMD Limb-Girdle Muscular Dystrophy Masterclass 🗓️ April 24-26, 2025 📍 Montreal, QC | | | |
TREAT-NMD is excited to announce an in-person Limb-Girdle Muscular Dystrophy (LGMD) Masterclass in Montreal, Canada, in April 2025, chaired by Dr Nicholas Johnson, of Children’s Hospital of Richmond at VCU and NMD4C investigator Dr Jodi Warman Chardon, from The Ottawa Hospital. This educational event is specifically designed for North American healthcare professionals involved in diagnosing and managing patients with LGMD and others in the neuromuscular field seeking to deepen their expertise. This masterclass offers an exceptional opportunity to: learn from leading experts, participate in interactive workshops and build connections. This free-to-attend masterclass also includes financial support for accommodation and travel costs, ensuring wider access for participants. Event details and registration are available here! | |
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Neuromuscular Mystery Rounds (CPD Accredited) 🗓️ Tuesday May 6, 2025 ⏰ 5pm ET
Speaker: Dr Mark Krongold, Neuromuscular Fellow, University of British Columbia | | | |
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🗓️ June 13-15, 2025 📍 Amsterdam, The Netherlands FSHD Europe, in collaboration with the FSHD Society, is excited to announce the first FSHD Connect Europe meeting! This exclusive event brings together FSHD patients and their families, clinicians, and researchers. It is a unique opportunity to connect, share experiences and building lasting connections. Don’t miss out on this exceptional opportunity to be part of the FSHD community’s growth! Spaces are limited, so register early to secure your spot. For more details about the FSHD Connect Europe Meeting, including the program, event information, location, and registration, please visit the registration website!
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New Publications & Research | |
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Rare Disease Day 2025 🗓️ February 28, 2025 | |
Friday February 28, 2025, is Rare Disease Day - the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners, and this year’s campaign shines a spotlight on the power of resilience and connection. Learn how you can help spread awareness and celebrate the strength of the rare disease community! | | | |
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⚠️Upcoming Deadline: ERDERA 2025 Joint Transnational Call for Proposals on Rare Disease Therapies | |
ERDERA announced the upcoming launch of its Joint Transnational Call (JTC) for Proposals 2025. This call invites interdisciplinary and transnational research teams from across Europe and beyond to submit collaborative projects focused on pre-clinical therapy studies for rare diseases using small molecules and biologicals. This could include the development of novel therapies, biomarkers for therapy efficiency, or replication of pre-clinical studies to validate findings. | | | |
*Muscular Dystrophy Canada has experience and interest in collaborating as a patient partner (required for the competition) – if you are interested in exploring a proposal with MDC, please contact Dr Homira Osman at research@muscle.ca! | |
Application Timeline: - February 13, 2025: Pre-proposal submission deadline.
- July 9, 2025: Full proposal submission deadline. Funding decisions are expected by December 2025.
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Share your news & events with the NMD4C | |
If you or your organization are hosting a neuromuscular event, conference or webinar, we would like to help you share it with our neuromuscular members! For further information and to have the NMD4C share your event, please contact network communications coordinator James Davis. | | | |
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Previous issues of the NMD4C newsletter You can view all of the previous editions of the NMD4C newsletter on our website!
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Our mailing address is: CHEO Research Institute, 401 Smyth Road, Ottawa, ON, Canada, K1H 8L1
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You are receiving this email as a subscriber to the NMD4C newsletter. If you'd like to change how you receive these emails you can update your preferences or unsubscribe from this list. or contact NMD4C coordinator James Davis at jadavis@cheo.on.ca with your request. | |
New Lecture Series on Multi-Disciplinary Care in NMDs | |
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