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

Can-Child Webinar: F-words Foundations Workshop
2025-12-04 09:30 - 12:30 (America/Toronto)
Interactive 3-hour F-words Foundations Workshop to explore how to bring the F-words for Child Development—Functioning, Family, Fitness, Fun, Friends, and Future—into everyday practice and life!

Duchenne Patient Academy 2025
2025-12-13 08:00 - 2025-12-14 17:00 (America/Edmonton)

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:

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.

ULF Webinar: The Guardianship Transition: Minor Child to Legal Adult
2026-01-18 14:00 - 15:00 (America/Toronto)
Catherine (Catie) Becker is a Pediatric Nurse Practitioner at Massachusetts General Hospital (MGH). Catie received her master’s degree in Pediatric Acute/Chronic Advanced Practice Nursing from the University of Pennsylvania. She has worked in the MGH Leukodystrophy clinic since 2011, working with a multidisciplinary team caring for both pediatric and adult patients with leukodystrophy.

ERN-EuroBloodNet-Session 1: Strong at Any Age – Redefining Frailty Together
2026-01-22 17:30 - 18:30 (Europe/Belgrade)
EuroBloodNet Topic on Focus: Ageing with a Bleeding Disorder”!
This educational program is coordinated by ERN-EuroBloodNet together with the umbrella patient organisation EHC – European Haemophilia Consortium, represented by ePAG advocate Marius Tanase.

Healthy Living and Aortopathy
2026-01-22 19:00 - 20:00 (America/Toronto)
Save the date for your upcoming webinar with Dr. Nathaniel Moulson, focused on exercise. This webinar will take place on January 22, 2026 at 7:00pm, registration details to be released in the coming weeks.

PiPER Community of Practice for 2026
2026-01-28 12:00 - 13:00 (America/Toronto)
Save the date on *January 28th 2026* from 12-1 pm for a dynamic session titled “Lessons Learned by a Research Team New to Engaging PLEX in Randomized Controlled Trials ”.

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.

Sickle Cell Awareness Group of Ontario (SCAGO) Learning for Life - Clinical Trials 101 What Every Patient Should Know Before Enrolling
2026-01-31 11:00 - 12:30 (America/Edmonton)
Considering a clinical trial? Join SCAGO for an informative virtual session designed to help patients and caregivers understand the process, benefits, and important considerations before enrolling.

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”

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.

Ataxia Canada Webinar- Income Tax Reduction and Estate Tax Elimination
2026-02-11 12:30 - 13:30 (America/Toronto)
You will learn:
➡️ To minimize or even Eliminate Taxes on your estate.
➡️ How to Change your Estate Plans in this virtual environment.
➡️ To Avoid Double Taxation on your “Red” retirement accounts.
➡️ To Bypass paying upfront Capital Gains Taxes when selling your investments.
➡️ To convert assets into an Income You Can’t Outlive and leave a Lasting Legacy.
➡️ How our government wants you to Save Taxes and Leave More To Charity.

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 2026 International Rare Disease Day
2026-02-28 10:00 - 16:00 (America/Toronto)
On February 28th, from 10 a.m. to 4 p.m., we invite you to participate in the RQMO 2026 International Rare Disease Day. The event will be held in hybrid mode, meaning that it will be possible to attend in person or virtually.

CAN-Child: F-words Foundations Workshop
2026-03-12 10:00 - 13:00 (America/Edmonton)
Join CAN-Child’s interactive 3-hour F-words Foundations Workshop and explore how to bring the F-words for Child Development—Functioning, Family, Fitness, Fun, Friends, and Future—into everyday practice and life!

Palliative care for leukodystrophies and other rare neurological diseases (pediatric focus)
2026-03-17 08:00 - 09:00 (America/Edmonton)
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Rare Disease Summit: Access USA
2026-03-17 08:00 - 2026-03-19 17:00 (America/Edmonton)
The Rare Disease Summit unites stakeholders to accelerate therapeutic innovation for areas of unmet medical need. Gain actionable insights on launch planning, market access, reimbursement strategies and strategic partnerships to optimize rare disease commercialization and elevate patient impact.

Rare Diseases International-Global Perspectives on Rare Disease Centers: What We Learned from Case Studies
2026-03-18 07:00 - 08:00 (America/Edmonton)
Join RDI for a public webinar exploring how rare disease centers are organized and how they function in practice across different countries and health system contexts. Rare disease centers play a critical role in improving diagnosis, care coordination, research, and access to treatment for people living with rare diseases. Yet, their structures, levels of recognition, funding models, and integration into national and international networks vary widely. To better understand this diversity, Rare Diseases International (RDI) conducted a series of qualitative case studies of selected rare disease centers worldwide. This public webinar will present key insights from the case studies. Through a panel discussion with representatives from participating centers, the session will reflect on shared enablers and barriers and highlight practical lessons learned.

RAREDIG McGill: Rare Disease Day 2026
2026-03-18 16:30 - 19:30 (America/Toronto)
McGill’s RareDIG is excited to welcome you to the eighth edition of Rare Disease Day! Millions of individuals are affected by rare diseases worldwide and Rare Disease Day is hosted in support of these patients and family members.

Students, researchers, physicians, patients, and community members will meet at Jeanne Timmins Amphitheatre at The Neuro (Montreal Neurological Institute-Hospital) in Montreal on March 18th to discuss the challenges faced by people with rare diseases, research and advocacy efforts. Poster presentations will also be prepared by student researchers with a keen interest in making a difference in the rare disease field.

CIHR Café Scientifique: Chronic Pain and Primary Care
2026-03-18 18:00 - 19:00 (America/Edmonton)
Join on Zoom for a free CIHR Café Scientifique! | March 18 @ 6:00 pm MST
Together you’ll explore what chronic pain looks like for young people and their families, how pain can occur across generations, and why quality care in our communities matters.

People's Perspectives: Living with Loeys-Dietz Syndrome
2026-03-19 19:00 - 20:00 (America/Toronto)
For the first time, the Loeys-Dietz Syndrome Foundation Canada and the Loeys-Dietz Syndrome Foundation – a division of the Marfan Foundation – are joining forces to bring you real talk about LDS from those with lived experience. Join four community members – two from the United States and two from Canada – for this dynamic moderated discussion.

PiPER Community of Practice: Patient Partners in Learning Health Systems: The Centre for Digital Health Evaluation Experience
2026-03-25 10:00 - 11:00 (America/Edmonton)
Save the date on *March 25th 2026* for a dynamic session entitled “Patient Partners in Learning Health Systems: The Centre for Digital Health Evaluation Experience”.

Gene Therapy for IEI: It's Taken Us So Long 'Cause We've Got So Far To Come
2026-03-25 10:00 - 12:00 (America/Edmonton)
Moderated by Dr. Jordan Orange, this important conversation will explore the progress, promise, and future of gene therapy for Inborn Errors of Immunity.

MitoRevolution Research Symposium and Innovation Day
2026-04-09 08:00 - 17:00 (America/Toronto)
Researchers, clinicians, and trainees working in mitochondrial science are invited to attend the 6th Annual MitoRevolution Research Symposium and Innovation Day, hosted by their partners Mito2i, on Thursday, April 9, 2026, at the MaRS Auditorium in Toronto.

Ehlers-Danlos Syndrome (EDS) Research Symposium
2026-04-09 08:00 - 2026-04-10 17:00 (America/Edmonton)
The Ehlers-Danlos Syndrome (EDS) Research Symposium is a two-day event, April 9-10, designed to bring together clinicians, researchers, students, patients, and community partners to examine current research, clinical challenges, and emerging approaches to the diagnosis and management of the Ehlers-Danlos syndromes.⁠
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