12 events found.
Events
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.
patient engagement
Events
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Lunch N’ Learn: Talking Research with Patient Partners
Join this virtual workshop on Zoom on April 24, 2025, at 12:00 p.m. (EST) to develop communication skills for engaging with patient partners in research. Hosted by the HBHL EDI Trainee Committee, the session features medical librarians and a patient advocate sharing insights on plain language and patient-oriented research. Presenters: Sabrina Burr, MISt - Librarian of the Neuro-Patient Resource Centre […]
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Navigating Conflict with Care: Building Stronger Patient Engagement Teams in Research
Conflict is a natural part of teamwork—but in family engagement in research, how we navigate it matters. Join them for a compassionate conversation on resolving conflicts in family engagement teams, fostering trust, and strengthening collaboration.
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PxP-Upcoming webinar: Growing your influence and a patient partner
Join PxP for an engaging webinar hosted in collaboration with the Patient Engagement Research Ambassadors at the Institute of Musculoskeletal Health and Arthritis.
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Community of Practice- Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research
📢 On July 30th from 12:00 - 1:00 pm EST Emine Kocabas, Ashley Berger, & Vishma Sookdeo will be speaking about “Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research”.
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2025 RARE Drug Development Symposium
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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PxP2025
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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PCSI 2025
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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EURORDIS Webinar: Patient Partnership 2025 – The Lupus100 Project
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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Community Engagement Series Event: From Intent to Impact: Evaluating Patient Engagement Within a Rare Disease Pediatric Network
Join the upcoming Community Engagement Series event: From Intent to Impact: Evaluating Patient Engagement Within a Rare Disease Pediatric Network. Hear from Maureen Smith🇨🇦 and Beth Potter about how to evaluate engagement beyond process metrics, and what this means for future patient engagement practice and evaluation.
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