Canadian Rare Disease Network

2nd Global Cell & Gene Therapy Summit
2025-07-07 08:00 - 2025-07-09 17:00 (America/New_York)

IMPaCT Webinar - An Overview of Current and Future Clinical Trials in Children: a European Perspective
2025-07-21 12:00 - 13:00 (America/Toronto)
Dr. Eva Degraeuwe (MD-PhD) is a dedicated pediatric resident and researcher in pediatric nephrology and global clinical trial optimilisation. Working in many Global networks focused on rare and low prevalance diseases, she has completed her PhD in 2024 participating and guiding over 35 clinical trials. Moreover, she has a passion for patient engagement, especially within a clinical trial setting.
Webinar Overview:
– European network setting and the role of networks
– Pathways to clinical trial optimilisation
– Patient engagement and what has been achieved

The 16th International CHARGE Syndrome Conference, “The Grand Adventure,”
2025-07-24 08:00 - 2025-07-27 17:00 (America/Denver)

Community of Practice- Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research
2025-07-30 12:00 - 13:00 (America/Edmonton)
📢 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”.

PxP Africa 2025: Virtual Meeting August 13, 2025 From Research Participants to Patient Partners in Research: Centering African Patients Voices
2025-08-13 18:00 - 20:00 (America/Edmonton)
PxP Africa is the first regional PxP meeting, led by Joab Wako and Kwanele Asante who are members of the 2025 steering committee for the global PxP conference taking place in September. PxP Africa will spotlight the critical role of patient partners—especially African patients—as active contributors in research, not just research participants. The session will challenge the traditional top-down model of research and explore how lived experience can inform, shape, and lead meaningful, inclusive studies.

PxP Australia 2025
2025-08-19 08:00 - 09:00 (America/Edmonton)
PxP Australia is a regional webinar, led by Letisha Living and Janelle Bowden who are members of the 2025 steering committee for the global PxP conference taking place in September. The theme of PxP Australia is “working well together” and Dr. Joan Carlini will be joining the session as a speaker.

2025 Transdisciplinary Child & Maternal Health Trainee Research Day
2025-08-26 08:00 - 17:00 (America/Edmonton)
Led by the Alberta Children’s Hospital Research Institute Trainee Association (ACHRITA) in partnership with the Owerko Centre and ACHRI, the graduate portion of this symposium is funded by UCalgary’s Graduate Students’ Association.

6th International Hypothalamic Hamartoma Symposium
2025-09-04 08:00 - 2025-09-05 17:00 (America/Belize)
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.

Rare Trials Summit
2025-09-09 08:00 - 2025-09-10 17:00 (America/Edmonton)
Bringing together key stakeholders in the clinical research community to accelerate the development of new rare disease therapies from average 10-12 years to under 3 years.

2025 C-Path Global Impact Conference
2025-09-09 08:00 - 2025-09-11 17:00 (America/Vancouver)
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.

IMPaCT Webinar: Lessons Learned from the Innovative Pediatric Clinical Trials (iPCT) Network
2025-09-10 10:00 - 11:00 (America/Edmonton)
Speakers: Tannis Erickson & Naveen Poonai Title: Lessons Learned from the Innovative Pediatric Clinical Trials (iPCT) Network

2025 NMD4C Annual Meeting
2025-09-11 08:00 - 17:00 (America/Toronto)
Registration is now open for the 2025 NMD4C Annual Meeting!
Join NMD4C in Ottawa on Thursday, September 11, for a full day of dynamic discussions, research updates, and networking opportunities—just ahead of the 7th Ottawa International Conference on Neuromuscular Disease & Biology.

PHA-Medical Think Tank
2025-09-11 08:00 - 2025-09-12 17:00 (America/Toronto)
Join Canada’s premier CPD event on pulmonary hypertension, co-developed by PHA Canada and the Canadian Thoracic Society, including:
· Keynote presentations by Dr. Steven Kawut (University of Pennsylvania) and Athénaïs Boucly (University of Paris-Saclay)
· Presentations on pulmonary hypertension topics from diagnosis through treatment
· Updates on pulmonary hypertension research.
September 11 & 12 in Toronto or via Zoom. For more information and to register: https://www.phacanada.ca/thinktank

2025 Pulmonary Hypertension Community Conference
2025-09-11 08:00 - 2025-09-13 17:00 (America/Toronto)
​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.

Ottawa NMD 2025 Conference
2025-09-11 08:00 - 2025-09-13 17:00 (America/Toronto)
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.

2nd Edition of the Symposium on Genetic Medicine
2025-09-12 08:00 - 17:00 (America/Toronto)
This year, the symposium will be dedicated to rare diseases, a major topic in genetics.

Canadian Cystic Fibrosis Conference
2025-09-17 08:00 - 2025-09-19 17:00 (America/Edmonton)
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 can address.

Undiagnosed Hackathon 2025
2025-09-21 08:00 - 2025-09-24 17:00 (America/Chicago)
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 today. In this unique event multidisciplinary teams of clinicians, bioinformaticians/molecular biologists, scientists, developers, AI specialists and brilliant minds will work together to tackle the most difficult diseases.

Advancing Rare Disease Healthcare: Spotlighting the Economic and Health System Burden of Disease
2025-09-23 09:30 - 11:30 (America/Edmonton)
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 or region with patient healthcare experience data and insights to drive change in practice and better health outcomes for people living with rare disease. The live virtual meeting is further supplemented with published studies and content.

Connected in Care Conference
2025-09-24 08:00 - 2025-09-26 17:00 (America/Toronto)
As part of Pregnancy and Infant Loss Network’s long-term vision, Connected in Care are hosting their second biennial educational conference at the Sheraton Parkway Toronto North Hotel & Suites in Richmond Hill on Wednesday, September 24 – Friday, September 26, 2025.

6th Western Canadian Neuromuscular Conference
2025-09-25 08:00 - 2025-09-27 17:00 (America/Edmonton)
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.

Biennial National Conference
2025-09-26 08:00 - 2025-09-28 17:00 (America/Edmonton)
Registration information coming soon.

Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights, and cGMP Gene Therapy Manufacturing capabilities in Canada
2025-10-01 13:00 - 16:00 (America/Toronto)
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 Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights, and cGMP Gene Therapy Manufacturing Capabilities in Canada–a focused half-day event dedicated to advancing gene and cell therapy development in Canada through regulatory alignment and manufacturing readiness.
This virtual symposium will convene international regulatory authorities, Canadian manufacturing experts, and rare disease developers to explore two critical enablers of translational success: clinical trial readiness and cGMP manufacturing capacity.

CAGC & CCMG Joint Conference
2025-10-05 08:00 - 2025-10-08 17:00 (America/Edmonton)
The CAGC & CCMG Joint Conference will be a unique gathering of medical and laboratory geneticists and genetic counsellors with diverse expertise, all sharing a common interest in education and advocating for best practices in clinical and laboratory genetics. Through presentations, workshops, breakout sessions, abstract sessions, and engagement with industry partners, the event propels forward clinical practice, scientific advancements, and excellence across all aspects of genetics in Canada.

Connected Minds: Exploring the Intersection of Brains, Machines & Society
2025-10-06 08:00 - 2025-10-08 17:00 (America/Toronto)
Explore the future of tech, health & society at the Connected Minds Conference 2025, where ideas ignite and innovation thrives!

30th Annual International Congress of the World Muscle Society
2025-10-07 08:00 - 2025-10-11 17:00 (Europe/Vienna)
The World Muscle Society is a dynamic community that aims to promote, disseminate, and share all aspects of neuromuscular physiology and diseases, from basic science to patient care. It encompasses a broad range of scientists and healthcare professionals who share the common interest for neuromuscular disorders.

2nd Canadian Symposium on Neurofibromatosis
2025-10-16 08:00 - 2025-10-17 17:00 (America/Edmonton)
This Symposium is aimed at the patients and families, as well as clinicians and health professionals (doctors, nurses, researchers).

Building Bridges: Advancing Collaborative Pediatric Palliative Care
2025-10-22 08:00 - 17:00 (America/Toronto)
This pediatric palliative care symposium is for health care professionals interested in increasing their knowledge and skill in working with children with serious illness and their families.
The goal is to share research and clinical experiences that broaden the perspectives and collaborative efforts to enhance the care delivery in hospital, home and hospice.
Pediatric-focused clinician’s and adult palliative care clinicians most welcome

The World Orphan Drug Congress
2025-10-27 08:00 - 2025-10-29 17:00 (Europe/Amsterdam)
The World Orphan Drug Congress is the largest and most established orphan drug & rare disease meeting of its kind across the globe.
From cell and gene therapy, genetic testing, and market access, to real world evidence, this one meeting covers the whole orphan drugs value chain where science, government and manufacturers all come together to create groundbreaking progress.

The 5th Annual Canadian Children, Youth and Communities (CCYC) In | Equity Conference
2025-10-29 08:00 - 2025-10-30 17:00 (America/Toronto)
This conference reaches a national, interdisciplinary audience and is a collaborative space where ideas are put into practice. Together, you’ll explore how sustainable solutions and community partnerships can improve child and youth health equity.
