Save-The-Date: RareKids-CAN Virtual Information Session
2025-03-24 08:00 - 11:00 (America/New_York)
During this information session, you will gain an overview of RareKids-CAN, build connections within the community, and more!

National Caregiver Day
2025-04-01 08:00 - 17:00 UTC
Carers Canada is proud to lead the National Caregiver Day 2025 campaign, dedicated to honouring the dedication and resilience of caregivers. This year, they’re focused on providing meaningful support through innovative initiatives designed to make a real difference.

National Healthcare Provider Workshop
2025-04-01 12:30 - 13:30 (America/New_York)
In celebration of National Caregiving Day, the Canadian Home Care Association (CHCA) is hosting the National Healthcare Provider Workshop on, which will bridge insights from Hope for the Best, Plan for the Rest (McMaster University) and the CHCA eiCOMPASS Project, highlighting the transformative work of both initiatives.

Information Session: 2025-2026 Funding Opportunity for Rare Disease Registry Improvement
2025-04-02 13:00 - 14:00 (America/Halifax)

Conscience Symposium on Open Drug Discovery
2025-04-07 08:00 - 2025-04-08 17:00 (America/New_York)

Five Good Ideas to support and benefit from working caregivers in your workplace
2025-04-09 11:00 - 12:00 (America/New_York)

RareKids-CAN Annual Conference
2025-04-10 08:00 - 2025-04-11 17:00 (America/New_York)
The mission of the RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network Strategic Planning Conference is to collaboratively shape the future of pediatric rare disease research and clinical trial capacity in Canada. By bringing together over 100 patient and family partners, researchers, sub-platform leaders, and key stakeholders, they aim to co-develop a shared vision that accelerates pediatric drug development and progress in clinical trials, improves treatment access, and strengthens national and international partnerships.

ACE Inhibitors as a Cardioprotective Treatment in Dystrophinopathies.
2025-04-17 10:00 - 11:00 (America/Halifax)
Join C-PATH on April 17, noon ET, for an insightful presentation by Dr. Karim Wahbi, Professor of Cardiology at the University of Paris and head of the Reference Center for Neuromuscular Cardiomyopathies. Dr. Wahbi specializes in the clinical management of cardiomyopathies, with a focus on neuromuscular diseases like Duchenne muscular dystrophy.

Lunch N’ Learn: Talking Research with Patient Partners
2025-04-24 12:00 - 13:30 (America/Toronto)
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 at The Neuro-MNI
Paule Kelly-Rhéaume – Medical librarian at the McGill University Health Centre
JoAnne Mosel, CPA – Advocate in the Rare Disease space with over 30 years of experience

Navigating Conflict with Care: Building Stronger Patient Engagement Teams in Research
2025-04-25 11:30 - 12:30 (America/Toronto)
​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.

Canadian Rare Disease Innovation Showcase 2025
2025-04-28 16:00 - 20:15 (America/Chicago)
Join us on Monday, April 28, 2025, at The Westin Hotel in downtown Calgary (or virtually) for an inspiring afternoon dedicated to innovation, collaboration, and progress in rare disease research and care.
This event will spotlight innovative advancements and inspiring stories from Canada’s rare disease community. Through engaging lightning talks and networking opportunities, you’ll connect with experts, exchange ideas, and be part of the movement driving meaningful change.
Every discovery has the power to change lives. Be part of the conversation and help shape the future of rare disease care in Canada.

Health Data for All of Us: A Public Dialogue on AI in Health
2025-04-29 08:00 - 16:00 (Asia/Karachi)
Join the conversation about key ethical, equity and privacy challenges related to AI and health!

Health Data for All of Us: A Public Dialogue on AI in Health
2025-04-29 08:00 - 16:00 (America/New_York)
Join HRDN conversation about key ethical, equity and privacy challenges related to AI and health!

Save the Date: Rare Disease Day 2025 Conference
2025-04-29 08:00 - 2025-05-01 17:00 (America/Denver)

Genome BC’s Genomics Forum 2025
2025-04-30 08:00 - 17:00 (America/Vancouver)

Managing Anxiety in Children and Adolescents with Neurodevelopmental Disorders (NDDs)
2025-05-01 18:30 - 20:30 (America/Edmonton)
Presenters: Thomas Qiao, MSc, Research Coordinator, Department of Psychiatry, University of Calgary Noah Furlani, MSc, Research Coordinator, Department of Psychiatry, University of Calgary Dr. Kara Murias, MD PhD FRCPC, Pediatric Neurologist, Alberta Children’s Hospital; Assistant Professor, Department of Pediatrics and Clinical Neuroscience, University of Calgary

FSHS 360 Conference
2025-05-03 08:00 - 17:00 (America/Toronto)
Patients and family members affected by FSHD are invited to attend an event hosted by the FSHD Canada Foundation and the FSHD Society! The FSHD 360 Conference Ontario is an event where patients and family can meet leaders in FSHD research and hear the latest updates, including presentations from NMD4C investigators Dr Lawrence Korngut and Dr Hanns Lochmuller.

Applying Principles of Equity, Diversity, Inclusion, and Accessibility in Patient Engagement with Equity Seeking Groups
2025-05-05 15:00 - 17:00 (America/New_York)

Save the date: Redefining Patient Engagement
2025-05-08 08:00 - 17:00 (America/Denver)

Webinar for Patient Groups: Evolving Patient Group Input in Drug Reimbursement Reviews
2025-05-08 11:00 - 12:00 (America/Edmonton)

Webinar: Canadian Survey on the Impact of Disease
2025-05-09 12:00 - 13:00 (America/Toronto)

PxP-Upcoming webinar: Growing your influence and a patient partner
2025-05-12 12:00 - 13:00 (America/Vancouver)
Join PxP for an engaging webinar hosted in collaboration with the Patient Engagement Research Ambassadors at the Institute of Musculoskeletal Health and Arthritis.

The Canadian Friedreich Ataxia Journey
2025-05-12 12:00 - 13:00 (America/Edmonton)
Muscular Dystrophy Canada recognizes World Friedreich Ataxia Awareness Day on May 17th 2025. Join them as they share their learnings from their recent Friedreich Ataxia journey mapping project!

Rett Rounds: Live Webinar Education Session
2025-05-13 18:30 - 20:30 (America/Toronto)

Society for Clinical Trials’ 2025 Annual Meeting “Shaping the Future: The Right Questions, Robust Answers”
2025-05-18 08:00 - 2025-05-21 17:00 (America/Vancouver)

Indigenous Data Governance Principles & New Approaches to Race-Related Data
2025-05-22 13:00 - 14:00 (America/Edmonton)
Working closely with First Nations, Inuit and Métis partners as well as urban Indigenous health service providers, ICES has developed unique partnerships that include data governance and data sharing agreements. This work, supported by the Indigenous Partnerships, Data and Analytics department at ICES, enables Indigenous-driven analyses using ICES data. In this session, Dominique Legacy and Laura Ferreira-Legere will discuss becoming a trusted partner and forming partnerships with Indigenous communities and organizations. They’ll explore current processes for using Indigenous data, and share how this work has informed planning for community governance of immigration data at ICES

XLID98 1st Annual Conference 2025
2025-05-31 08:00 - 16:30 (America/Edmonton)

Unity Through Rheumatic Diseases: In-Person Event
2025-05-31 08:00 - 17:00 (America/New_York)

Unity Through Rheumatic Diseases: In-Person Event
2025-05-31 08:00 - 17:00 (America/New_York)
Take a Pain Check Foundation is thrilled to invite you to Unity Through Rheumatic Diseases, an in-person event dedicated to promoting collaboration and driving change in rheumatology. Join us on Saturday, May 31, 2025, from 8:00 AM to 5:00 PM EST at the InterContinental Toronto Centre (225 Front St W, Toronto, ON M5V 2X3) for a day of insightful discussions, networking, and empowerment.

BHI Cafe Scientific-Where the brain and heart meet
2025-06-04 18:00 - 20:00 (America/Toronto)
This event will highlight innovative, patient-oriented strategies designed to address fragmented care for brain and heart conditions. Although brain and heart health are closely linked, the heath care system often treats them in isolation. This Café Scientific will showcase how research is driving real-world solutions that enhance patient care.
