Canadian Rare Disease Network

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.

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

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

unfolding PANS PANDAS | reshaping BRAIN+BODY health
2025-05-29 08:00 - 2025-05-30 17:00 (America/Edmonton)
This inaugural national conference brings together leading experts from Canada and beyond to explore the physiological and psychological complexities of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS).

D2R Scholar Awards Info Session
2025-05-28 12:30 - 13:30 (America/Edmonton)
Have questions about the D2R Scholar Award? Join their online info session On May 28th from12:30-1:30pm to learn more!

International Myotonic Dystrophy Consortium (IDMC-15)
2025-05-26 08:00 - 2025-05-30 17:00 (America/New_York)
The event will now make a stop in Canada, in the picturesque and warm Saguenay—Lac-Saint-Jean region of the province of Quebec.
A unique opportunity to network and share advances and initiatives in myotonic dystrophy research! Take advantage of this not-to-be-missed event!

European Society of Human Genetics Conference
2025-05-24 08:00 - 2025-05-27 17:00 (Europe/Vienna)

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

CureDuchenne 2025 FUTURES National Conference
2025-05-22 08:00 - 2025-05-25 17:00 (America/Kentucky/Louisville)
This annual event is dedicated to providing education, connection, and hope to the entire Duchenne community.

Milestones & Momentum: 10 Years of Progress, 10 Years of Possibility
2025-05-21 18:00 - 20:30 (Europe/Paris)
RDI will be holding a side event at World Health Assembly 78 in Geneva. Join them as the community celebrates 10 years of progress and looks forward to 10 more years of redefining what’s possible!

KidsAction Coaching: Community physical activity programs tailored for you!
2025-05-20 12:00 - 13:00 (America/Vancouver)
🎤 Dr. Stephanie Glegg—a pediatric occupational therapist, researcher, and proud parent of a child with neurodiversity—will share how KidsAction Coaching supports children with exceptionalities to thrive in community-based physical activity programs.
🌍 You’ll learn about:
✅ Free online resources for families & program leaders
✅ 140+ inclusive physical activities
✅ Goal-setting & adaptation strategies
✅ Cultural safety & child-centered programming

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)

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

15th MGFA International Conference on Myasthenia and Related Disorders
2025-05-13 08:00 - 2025-05-15 17:00 (Europe/Paris)
Hosted by the MGFA, this influential gathering of neuromuscular researchers and medical professionals is a prominent opportunity to present your work and hear from accomplished peers from around the world. We hope that you will be able to join us for this premier scientific gathering of global MG leaders.

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!

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.

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

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

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

TruePKU Meeting
2025-05-08 08:00 - 17:00 UTC
Mark your calendar for May 8, 2025, for the TruePKU meeting – a first-of-its-kind opportunity for members of the PKU community to share their experiences, needs, and treatment priorities directly with the U.S. Food and Drug Administration, life science companies with active PKU programs, researchers, and healthcare professionals.

2025 NMD4C Basic Research Summer School
2025-05-07 08:00 - 2025-05-08 17:00 (America/New_York)
The annual NMD4C summer school provides lecture-based and hands-on training workshops to neuromuscular trainees in cutting-edge wet lab techniques, while providing an environment for trainees to present their research and network in-person with colleagues and senior investigators from across Canada.

Medicines Reimagined: Unlocking the Potential of Existing Drugs for Patient Benefit
2025-05-07 08:00 - 2025-05-08 17:00 (Europe/Helsinki)
Join iDR25 – the international drug repurposing conference – to unlock the full potential of medicines by driving innovation for patient benefit. From cutting-edge AI approaches transforming drug discovery to exploring innovative business models and regulatory pathways for market access

Palliative Care in Chorea and Huntington's Disease
2025-05-06 19:00 - 20:00 (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).

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)

FSHD 360 Conference
2025-05-03 08:00 - 17:00 (America/Toronto)
FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in Ontario as well as from biopharmaceutical companies that are working on FSHD therapies. Get answers to your questions about your health, maintaining optimal function through physical therapy, exercise, assistive devices, and more. Don’t miss out on the opportunity to meet patients and families and network with FSHD Society leaders and activists in the community!

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.

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

Myotonic Dystrophy Foundation Conference 2025
2025-05-01 08:00 - 2025-05-04 17:00 (America/New_York)
MDF invites you to attend the Professional Track at the 2025 MDF Conference in Indianapolis, Indiana from May 1st to May 4th! Sometimes called the “DM family reunion” – the MDF Conference is an event to unite the DM community in our journey towards treatments and a cure for myotonic dystrophy (DM). This year’s program includes educational sessions exploring research, drug development, symptom management, and other critical topics for DM families, plus opportunities for formal and informal networking, wellness, and fun!

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

Neurodiversity in the Workplace: 6 Principles for Inclusion
2025-04-29 10:00 - 11:00 (America/Edmonton)
Learn how to create a more inclusive workplace for neurodivergent employees with our 6 principles!
