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.
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Rare disease patient advocates are taking the lead in research like never before, driven by the urgent need for new treatments. The RARE Drug Development Symposium hosted by Global Genes in partnership with Boston Children’s Hospital is designed to equip advocates with the knowledge, skills, and connections to navigate early-stage research with confidence. During this […] |
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Presented by Hope for HH and Hospital Sant Joan de Déu Barcelona, this symposium will gather leading experts, patients, and caregivers from around the world to share the latest research, clinical advances, and treatment strategies for Hypothalamic Hamartoma (HH)! Alexis Arzimanoglou and Helen Cross are part of the Symposium Committee.
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Getting ready for a new school year can be exciting—but also challenging when pulmonary hypertension (PH) is part of the picture. Join in on Thursday, Sept 4 at 11:00 AM EST for a virtual round table with Janette Reyes, PH Pediatric Nurse at SickKids Hospital. |
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As C-Path celebrates its 20th anniversary, CGIC 2025 stands out as a milestone event—bringing together a global community dedicated to advancing medical innovation and improving patient outcomes. Whether you're joining us from industry, regulatory agencies, academia, patient organizations, or as someone with lived experience, you’ll find valuable insights, thought-provoking discussions, and meaningful opportunities to collaborate. 
The PxP (For Patients, By Patients) conference will be September 9-11 (for those in Europe, Africa or North and South America), or 10-12 (Asia and Oceania). This free, virtual event aims to bring you a wealth of knowledge, skills and resources on Patient Engagement in health research. |
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From September 10 to 12, 2025, the 37th PSCI conference will be held at the Quebec City Convention Centre under the theme: "Patient Grouping as a Driver of Value in Health: The Patient at the Heart of Our Decisions." The topics will be: Innovations in case-mix, data and technology. Advancements in coding, classification systems, and data quality. Case-mix […] |
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Join PHA Canada’s 2025 PH Community Conference to explore how they can drive meaningful change and inspire hope across the PH community. This year’s event will feature powerful keynote speakers, interactive workshops, and engaging panel discussions—all designed to empower you with new strategies, the latest research, and stories of resilience and innovation. 
7th Ottawa International Conference on Neuromuscular Disease and Biology will take place at the Fairmont Château Laurier in Ottawa, Canada on September 11-13, 2025. The Ottawa NMD 2025 conference will offer an outstanding program emphasizing recent breakthroughs in basic and translational research and clinical discoveries in neuromuscular disease. |
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Join CFC September 17 –19, 2025 for Cystic Fibrosis Canada’s first Canadian Cystic Fibrosis Conference, hosted in Calgary, Alberta. The conference will spotlight the development of Canadian consensus and national standards for CF care, explore early implementation strategies, and highlight hot topics in healthcare and research and knowledge gaps that future research and clinical trials […]
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Join RareKids-CAN on September 17, 2025, from 2-3pm ET for their next education session, led by their Patient and Family Engagement Facilitators. This session is open to everyone interested in strengthening engagement practices. Don't miss out! |
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The Lupus100 Project, recognized as a winner of the 2025 Patient Partnership Good Practice Challenge, highlights the crucial role of patient partnership in improving communication about rare diseases such as lupus. |
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This year’s theme focuses on how nutrition can support mitochondrial health. You’ll hear from experts across Australia, Italy, and Brazil, sharing practical strategies and the latest research relevant to LHON and other types of mito. |
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350 million people live with an undiagnosed disease worldwide. Genome sequencing can provide answers for 40% of the People Living With Undiagnosed Disease (PLWUD) but around 60% still don’t receive a diagnosis. The purpose of the Undiagnosed Hackathon is trying to find new ways and collaborations to solve the undiagnosed diseases, that can’t be solved […] |
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Please join this 1.5-hour live virtual meeting to hear esteemed faculty describe the global economic impact of rare diseases on patients and healthcare systems. Expert community advocates will also share their practical experience of advancing patients’ needs with key stakeholders. Panel discussion and audience questions will consider how to have meaningful impact in your country […] |
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The 6th Western Canadian Neuromuscular Conference is confirmed for 2026! Don’t miss the opportunity to network with leading experts and stay at the forefront of medical advancements in the field of neuromuscular diseases. |
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The Stem Cell Network (SCN) and the National Research Council Canada (NRC) are excited to contribute to the national conversation on cell and gene therapy for rare diseases. Building on the 2024 event titled “Canadian Rare Disease Ecosystem Symposium: Genetic Therapies for Rare Disease”, SCN and NRC are pleased to invite you to the Canadian […] |
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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!
Help us expand our calendar and ensure that rare disease happenings are accessible to all. Submit your event details
HERE!
