Welcome to our Events Calendar! Stay up-to-date with the latest happenings in the rare disease community in Canada and beyond. From webinar and conferences to workshops and other events, our calendar is your one-stop destination for all rare disease-related happenings. Explore upcoming events, mark your calendar, and join as we work together to make a difference in the lives of those affected by rare diseases.
Watch our walkthrough videos in English and French for guidance navigating the calendar HERE.
Join the Canadian Rare Disease Network (CRDN) - Réseau Canadien des Maladies Rares - for a dynamic townhall to engage with thought leaders, experts, and the rare disease community as we explore and shape the future of rare disease care and research in Canada. This townhall will provide an overview of the CRDN and its […]
This Conference is for primary care practitioners and physician specialists who encounter patients with complex health issues and chronic pain in their clinical practice, which may or may not be related to Ehlers-Danlos Syndromes or hypermobility Spectrum Disorders (EDS/HSD+).
The Ehlers-Danlos Society is delighted to welcome you to register for the EDS ECHO Summit: Diet and Nutrition, a virtual event held on November 2, 2024. This event is suitable for community members, their friends, families, and caregivers, as well as healthcare professionals.
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
Register today! Join the Community Townhall Meeting on Wednesday, November 6, 12:30PM EST/ 9:30 AM PST. You will hear from CF Canada’s President and CEO Kelly Grover on the latest updates in CF research and care, be inspired by stories of how Canadians CF community members are shaping a future without limits and learn how […]
This virtual workshop will focus on exchanging strategies, tools and experience in measuring the value of genomic testing in healthcare. Demonstrating value is key in informing health technology assessments (HTAs), clinical practice and policy decisions and yet standardized outcome measures and frameworks are still in their infancy. The task of demonstrating value is further complicated […]
GANSID Congress 2024 is the 2nd Congress of the Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID) taking place virtually to ensure all clinicians, people with hereditary blood disorders, and global advocates can participate from any part of the world.
Making sense of your lab tests involves more than just knowing why the test is done. It’s also important to understand what the results mean and what can affect the results. Join the webinar to better understand how your results affect your treatment and help you to manage your MDS, AA or PNH.
In this presentation, facilitators will walk attendees through Six Principles that promote more supportive and, ultimately, successful work environments. In addition to explaining the basic concepts of each principle, attendees will receive practical, actionable ideas and strategies to apply the principles in your own workplace.
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
Living with a rare condition can significantly impact a person’s identity, as they may struggle to separate who they are from their condition. This internal conflict is often intensified during formative years, affecting self-perception and even sexuality. The stigma and discrimination associated with rare diseases, especially genetic ones, add further challenges. Carriers of genetic conditions […]
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
This monthly Q&A drop-in session is available for people living with ALS, their families, caregivers, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials.
You are invited to join an insightful webinar hosted by ERNICA, eUROGEN, and EURORDIS on Mental health and behavioral difficulties in children with rare neonatal surgical disease: assessment, outcomes and implications for research, policy and practice'. This interactive session will raise awareness of the mental health and behavioral challenges faced by children with rare neonatal surgical […]
Delivered by Prof. Anders Oldfors (University of Gothenburg, Sweden) on November 21st 2024 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology. READ CAREFULLY please: By registering and attending the webinar you consent to the recording of the webinar and its later diffusion […]
Join Cystic Fibrosis Canada’s National Advocacy Update on Thursday, November 21, from 7-8 PM ET. This virtual event is open to volunteer advocates, and anyone wanting to advocate for individuals living with cystic fibrosis.
The Role of Genetic Counselors in Genomic Mainstreaming is an international panel discussion and interactive Q & A with Demetra Georgiou, Genomic Transformation Manager at Imperial College Healthcare NHS Trust, Jill Stopfer, Associate Director of Genetic Counseling at the Dana Farber Cancer Institute, and Laura Hercher, Director of Student Research at Sarah Lawrence College Human […]
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
This webinar explores the challenges individuals with spina bifida face from adolescence to adulthood, focusing on patient-reported outcomes (PROMs) and urological management. Neurogenic bladder, a prevalent complication in SB, often leads to incontinence, hydronephrosis, and urinary tract infections, which may significantly affect quality of life (QoL). Advances in medical and surgical management have reduced the […]
Travel the globe with the International Alliance Academies of Childhood Disability (IAACD) in a 24-hour VIRTUAL listening and sharing session to celebrate the International Day of Persons with Disabilities! This year’s theme is “Families: Who Cares for Them?”. For the first time ever, Canada is represented in this event!
Do you have an upcoming event, webinar, or conference relevant to the rare disease community in Canada? We’d love to feature it on this page!
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