Canadian Rare Disease Network

Introduction to the Disability Tax Credit
2025-12-02 12:30 - 13:30 (America/Toronto)
A presentation about the gateway tax credit and the benefits it unlocks:

Learn how the credit works and who qualifies
Learn how the credit unlocks other federal benefits
Discover practical tips for your application

CARELeuko Symposium 2025
2025-12-05 08:00 - 17:00 (America/Toronto)
The Canadian Association for Research Excellence in Leukodystrophy (CARELeuko) is excited to welcome you to the 2025 CARELeuko Symposium: Uniting Canada’s Leukodystrophy Community to Drive Collaboration and Accelerate Research and Care!
The 2025 CARELeuko Symposium is taking place on Friday, December 5, 2025, at the Research Institute of the McGill University Health Centre in Montreal, Quebec, Canada.

36th International Symposium on ALS/MND
2025-12-05 08:00 - 2025-12-07 17:00 (America/Los_Angeles)
The International Symposium is the biggest annual conference dedicated to ALS and MND research. Each year they bring together researchers from around the world to share new understanding of amyotrophic lateral sclerosis and motor neurone disease.

FA Together: Learn. Share. Connect. mini-regional conference in Calgary
2025-12-08 17:00 - 19:00 (America/Edmonton)

2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases
2025-12-09 08:00 - 2025-12-10 17:00 (America/Edmonton)
This second edition will convene a wide range of international experts, including researchers, clinicians, patient advocates, industry representatives, policymakers, and funders to strengthen the collaborative ecosystem that underpins clinical research in rare diseases worldwide.

SMA Together: Learn. Share. Connect. A Mini-Regional Conference - Toronto
2025-12-13 11:00 - 14:00 (America/Toronto)
The SMA Together: Learn. Share. Connect. Mini-regional conference in Toronto is less than three weeks away! Join them, in-person on December 13 to learn about the latest updates in spinal muscular atrophy, including:

ERDERA: Joint Transnational Call 2026
2025-12-16 15:00 - 17:00 (America/Edmonton)
This information webinar on the 2026 Joint Transnational Call for Proposals is scheduled for 16 December 2025, 15:00–17:00 CET, focusing on resolving unsolved rare genetic and non‑genetic diseases.

RealiseD Webinar 1: Realising Clinical trials in Ultra-Rare diseases
2026-01-13 17:00 - 18:30 (America/Edmonton)
Join RealiseD’s first webinar to learn how RealiseD is pioneering a collaborative and comprehensive approach to clinical trials in ultra-rare diseases. During the webinar, they’ll walk you through the project’s objectives, structure, and methodologies—and show how you can be part of this transformative journey.

CanPKU+: Advocacy in Action Update Sessions
2026-01-14 19:00 - 20:00 (America/Edmonton)
Join the Advocacy in Action Update Sessions with John Adams in order to hear updates on various campaigns and what needs to be done to move things forward for the PKU community.

Rare Disease Internation-Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action
2026-01-15 05:30 - 06:30 (America/Edmonton)
Join RDI for this public webinar where they will discuss the current status of the WHA Resolution implementation, as they approach the World Health Organization Executive Board meeting taking place in February 2026. This webinar will engage in a multistakeholder dialogue focusing on the necessary path forward to accelerate the implementation of the Resolution and importantly the development of the GAPRD.

Knowledge Sharing Sessions – Feasibility of a Home-Based Exergaming Intervention for Youth With Spinal Muscular Atrophy.
2026-01-19 19:00 - 20:00 (America/Toronto)
Dr. Geoff Frost will be leading NMD4C’s first Physiatrist Community of Practice (CoP) Knowledge Sharing Session. He will present a recent article authored by Iraqi et al. on a work conducted in Canada by fellow NMD4C members: “Feasibility of a Home-Based Exergaming Intervention for Youth With Spinal Muscular Atrophy.”
The session will take place on January 19th, 2026 at 7:00 PM EST. To register, please contact CoP manager Maria Masnata. Once registered, Maria will send a calendar invite so you can easily save the date. We are looking forward to seeing you there!

RealiseD Webinar 2: Evidence Assessment Framework. A need to change mindset from developers, regulators and HTA
2026-01-20 17:00 - 18:30 (America/Edmonton)
The second webinar turns the spotlight on one of the most critical issues in rare disease research: the generation and assessment of evidence. François Meyer, a leading consultant in health technology assessment, will examine why current frameworks often fail to deliver predictable and aligned outcomes, resulting in delays and inequalities in patient access. The session will explore the global and European initiatives aimed at addressing these shortcomings and present the RealiseD consortium’s efforts to advance scientific and operational solutions. More importantly, it will advocate for a fundamental shift in mindset—one that embraces flexibility and innovation in the way evidence is generated, interpreted, and assessed.

Canada's Drug Agency-Preconsultation Webinar: Improvements to the Drug Reimbursement Review Process
2026-01-28 14:00 - 15:30 (America/Toronto)
Join CDA’s preconsultation webinar on proposed improvements and upcoming procedural changes to our drug reimbursement review process.
You will hear from their senior leaders how these plans will advance our efforts to modernize and streamline drug reimbursement reviews.

Defeat Duchenne Canada-Research Grant Announcement 2026
2026-01-29 18:00 - 19:30 (America/Toronto)
Mark your calendar for Thursday, January 29, 2026, from 6:00–7:30 p.m. ET, and join Defeat Duchenne Canada online for an evening celebrating the incredible progress of their community and the promise of the future.

RealiseD Webinar 3: Single arm, RCT or something in between – how to enrich clinical trial design and analysis in rare diseases
2026-02-03 17:00 - 18:30 (America/Edmonton)
Single-arm trials remain a cornerstone of rare disease research, but their limitations and complexities cannot be ignored. In the third webinar, experts Yulia Dyachkova (Merck Healthcare), Jenny Devenport (Roche), Cornelia Dunger-Baldauf (Novartis) abd Guillaume Canaud will lead a deep dive into the evolving role of SATs in drug development. The discussion will cover regulatory and HTA perspectives, review case studies of success and failure, and explore advanced statistical methods designed to optimise trial design. This session is not just about understanding the current landscape—it is about shaping the future of evidence generation for rare and ultra-rare diseases.

RQMO: 2nd Zebinary of the Month of Zebra 2026
2026-02-05 10:00 - 12:00 (America/Edmonton)
Speaker: Dr. André Megarbane, Professor, Department of Human Genetics, lebanese American University, Beirut, Lebanon

OSSU World Café Conversations Series:"Find and Seek: Conversations on Matching Researchers and Lived Experience Partners"
2026-02-06 10:00 - 12:00 (America/Edmonton)
OSSU World Café Conversations series with Maureen Smith🇨🇦, Aleisha F. and supported by Ontario SPOR SUPPORT Unit (OSSU):
“Find and Seek: Conversations on Matching Researchers and Lived Experience Partners”

RQMO: 3rd Zebinary of the Month of Zebra 2026
2026-02-09 10:00 - 12:00 (America/Edmonton)
3rd Zebinary of the Month of Zebrier 2026
Speaker: – David Cohen, Professor, Faculty of Health, Sorbonne University, Paris, France

8th TREAT-NMD® International Conference – Lisbon, 2026
2026-02-10 08:00 - 2026-02-12 17:00 (Europe/Lisbon)
Join TREAT-NMD at this vital, in-person gathering where patients, clinicians, researchers, industry, and regulators come together to tackle the biggest challenges in neuromuscular treatment development, diagnosis and care. Topics will include; disrupted clinical trial delivery, regulatory uncertainty, global access inequalities and shrinking public funding, they’ll tackle these themes with a holistic, solutions-driven approach and a patient centric and global focus.

Community Engagement Series Event: From Intent to Impact: Evaluating Patient Engagement Within a Rare Disease Pediatric Network
2026-02-10 10:00 - 12:00 (America/Edmonton)
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.

RealiseD Webinar 4: Enhancing patient-centricity in Rare Disease Clinical Trials
2026-02-10 17:00 - 18:30 (America/Edmonton)
The final webinar focuses on what truly matters: the patient. Rare disease trials often struggle to capture outcomes that reflect patient priorities but RealiseD is working to change that. Rudradev Sengupta, Senior Trial Design Lead at One2Treat, will present an approach that embeds patient voices into every stage of trial design and analysis. By using hierarchical endpoints and net treatment benefit, this framework balances benefits and risks in alignment with patient preferences, enabling transparent discussions among stakeholders and ensuring that success is defined by what matters most to patients. This is a vital conversation for anyone committed to making clinical research more humane and impactful.

RQMO: 4th Zebinary of the Month of Zebra 2026
2026-02-11 10:00 - 12:00 (America/Edmonton)
Speaker: – Jacques P. Tremblay, Ph.D, Full Professor, Department of Molecular Medicine, Faculty of Medicine, Université Laval

RQMO: 5th Zebinary of the Month of Zebra 2026
2026-02-16 10:00 - 12:00 (America/Edmonton)
Speakers: – Christine Yergeau, Msc, RARE Network Manager. QC
– Lilit Antonyan, Research Pillars Coordinator at RARe.qc

Cassie&Friends: Rare Talks-When Answers Take Time: Real Lives, Rare Disease, and Support That Matters
2026-02-17 17:00 - 18:30 (America/Edmonton)
Held during Rare Disease Month, this annual virtual event brings together families, youth, and the broader childhood rheumatic disease community to make rare experiences visible—and to remind families that they are not alone. Through shared stories, trusted information, and meaningful connection, RareTalks offers support for every stage of the journey, from first symptoms to long-term care.

RQMO: 6th Zebinary of the Month of Zebra 2026
2026-02-19 10:00 - 12:00 (America/Edmonton)
Speaker: – Josée Chénard, TS, PH.d, Professor, Department of Social Work, Université du Québec en Outaouais

Canada's Drug Agency: How Global Policy Changes Are Reshaping HTA for Rare Diseases
2026-02-19 13:00 - 14:30 (America/Edmonton)
HTAi’s Rare Disease Interest Group will celebrate 2026 Rare Disease Day with a conversation on how global policy changes are reshaping HTA processes for rare disease technologies. The webinar aims to update the global HTA community on recent advances in rare disease policy, particularly following the adoption of the World Health Assembly (WHA) Resolution on Rare Diseases, and to explore its implications for HTA systems globally. The multi-stakeholder expert panel will discuss how global policy commitments can translate into meaningful regional, national, and local action within HTA. This event is the inaugural webinar in a year-long webinar series, catalyzing discussions on how legislative changes in health systems are reshaping HTA for rare diseases through regional real-world case studies and examples.

Rare Disease Day 2026: Advancing the Rare Brain Disease Ecosystem
2026-02-24 09:00 - 16:00 (Europe/Brussels)
Placing brain health at the core of rare brain disease prevention and management, this event gathers multidisciplinary experts from research, clinical care, patient advocacy, and industry to share perspectives and priorities on the rare brain disease research, care, and policy space. The meeting will focus on reviewing key developments in regulatory frameworks and discussing strategies to advance the RBD Ecosystem and develop a comprehensive Knowledge Hub.

PhenoTips: Matchmaking for Rare Disease Diagnosis
2026-02-25 10:00 - 11:00 (America/Edmonton)
Matchmaking for Rare Disease Diagnosis is a panel discussion and interactive Q&A with patient matchmaking pioneers, Dr. Nara Sobreira, Matthew Osmond, CGC, and Dr. Orion Buske.

RQMO: Last Zebinary of the Month of Zebra 2026
2026-02-26 10:00 - 12:00 (America/Edmonton)
Speaker: – François Bernier, entrepreneur, strategist, co-founder of Horizon b2b

CORD Rare Disease Day 2026 Webinar
2026-02-27 10:00 - 11:00 (America/Edmonton)
ACCELERATED ACCESS TODAY, DEMONSTRATING VALUE FOR 2026 AND BEYOND
This Rare Disease Day, join CORD for a 1-hour webinar marking the first 1.5 years of Canada’s Rare Disease Drug Strategy (RDDS). The session celebrates progress in accelerated access while focusing on what comes next: demonstrating value.
