Canadian Rare Disease Network

Clinical Trials Ontario Conference
2024-11-06 08:00 - 2024-11-07 17:00 (America/Halifax) | Hilton, Toronto, Toronto, Ontario, Canada
The CTO Clinical Trials Conference is a leading Canadian forum to drive innovation in clinical trials, including leaders from the pharmaceutical and medical device industries, academic and healthcare leaders, representatives from patient groups, health charities and research institutions. This annual event provides a unique opportunity for members of our multi-stakeholder sector to collaborate, exchange knowledge and advance clinical trials.

National Advocacy Update
2024-11-21 19:00 - 20:00 (America/Chicago)
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.

Fall 2024 Rare Disease Conference
2024-11-26 08:00 - 2024-11-27 17:00 (America/Halifax)

Accessing Data through DASH
2024-12-04 11:00 - 12:00 (America/Denver)
Learn how HDRN Canada’s Data Access Support Hub (DASH) can help health researchers access multi-regional data.

ACT Canada Webinar Series: Health Policy Trials Unit: Closing the gap between evidence and policy with David Campbell, Amity Quinn & Terry Saunders-Smith (Calgary AB)
2024-12-09 15:00 - 16:00 (America/New_York)
This webinar will provide an introduction to the Health Policy Trials Unit at the University of Calgary, which was established with funding from ACT Canada. The presenters will define policy trials and illustrate key elements and challenges of policy trials through examples of past and current projects. Learning objectives: 1. Understand what health policy trials are 2. Recognize why and when to conduct policy trials 3. Identify key components and challenges of health policy trials

Conférence sur les mesures et programmes financiers pour les personnes en situation de handicap
2024-12-11 12:30 - 13:30 (America/New_York)

ALS Canada Webinar: Exploring Holistic Therapies
2024-12-11 13:00 - 15:00 (America/New_York)
Join ALS Canada and a panel of presenters for the ALS Canada Webinar: Exploring Holistic Therapies to learn about various holistic therapies and techniques including Reiki, deep breathing, intuitive energy healing, and wellness drumming. Each presenter will have a small presentation and demonstration.

ACT Canada Webinar Series: Engaging patient partners in your CIHR grant application: Everything you ever wanted to know with Maureen Smith & Andrea Chow (Ontario)
2025-01-16 12:00 - 13:00 (America/New_York)
Learning Objectives:

Review the ways in which patients can contribute as partners on your CHIR grant application
Identify the challenges and barriers to patients in fulfilling grant application requirements and how researchers can support patient partners
Describe the considerations specific to grant application requirements for researchers working with patient partners from groups who are frequently under-served by health research

Neuromuscular Mystery Case Rounds
2025-02-04 19:00 - 20:00 (America/New_York)
Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to Neuromuscular Mystery Case Rounds. This case-based rounds webinar is for Canadian clinicians, academics, and trainees with an interest in neuromuscular disease. NMD4C and MDC are providing organizational and technical support. This is an independent clinical/academic webinar with no industry sponsorship or influence.

2025 Clinical Trials Training Summit
2025-02-24 08:00 - 2025-02-26 17:00 (America/Chicago)

CORD Rare Disease Day 2025 Webinar
2025-02-28 12:00 - 13:00 (America/New_York)
CORD is hosting a special webinar on Friday, Feb 28 from 12-1pm EST so that everyone from across Canada can tune in and help put that funding to work. Here’s what they’ll discuss: – Ending the diagnostic odyssey with CHEO’s ThinkRare – Treating and tracking rare diseases at BC Cancer – Caring for complex kids and adults at BC Children’s Hospital – The challenge of treating adults with SMA in Manitoba – Measuring the socioeconomic impact of rare diseases on families and health systems

Thriving with Duchenne
2025-02-28 13:00 - 14:00 (America/Denver)

Rare Disease Day 2025: Unlocking Hope for Rare Diseases
2025-03-01 09:00 - 13:00 (America/Denver)
On Saturday March 1st, the Rare Disease Network of Alberta (rDNA) will be hosting Rare Disease Day 2025: Unlocking Hope for Rare Diseases in Edmonton. Members from their team will be attending!

Webinar - Initiating Clinical Trials in Canada
2025-03-05 12:00 - 13:00 (America/New_York)

ALS Clinical Trials Unboxed
2025-03-06 13:00 - 14:00 (America/Denver)
Join ALS Canada, on March 6 at 1:00 pm ET, for ALS Clinical Trials Unboxed. In this webinar, Dr. Lauren Kett, Medical Director of Clinical Development at Amylyx Pharmaceuticals will present on the Phase 1 LUMINA study, an investigational antisense oligonucleotide (ASO) targeting calpain-2 for the potential treatment of ALS.

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)
