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

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

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.

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!

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.

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

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)

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

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!

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.

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

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

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!

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!

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).

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

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

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.

Advancing Innovation in Rare Disease Research
2025-06-02 08:00 - 2025-06-03 17:00 (America/Vancouver)
Join researchers, clinicians, and industry leaders to discuss real-world research breakthroughs, novel #ClinicalTrial designs, and how NORD’s Rare Disease Centers of Excellence are leading collaborative efforts in #RareDisease innovation.

BHI Cafe Scientific-Where the brain and heart meet
2025-06-04 18:00 - 20:00 (America/Toronto)
This event will highlight innovative, patient-oriented strategies designed to address fragmented care for brain and heart conditions. Although brain and heart health are closely linked, the heath care system often treats them in isolation. This Café Scientific will showcase how research is driving real-world solutions that enhance patient care.

Wilson Disease Event for patients, families, and caregivers
2025-06-07 08:00 - 17:00 (America/New_York)
The newly formed Canadian chapter of Wilson Disease Association is hosting a one day conference for WD patients, caregivers, friends, medical students, physicians and supporters.
They are bringing together the top Canadian doctors who treat Wilson disease.
Great opportunity to network and learn more about treatment options for Wilson disease.
More details and registration link coming soon.
Open to everyone interested in learning more about this rare genetic disorder.
For more information, visit alice.williams@wilsonsdisease.org.

Superficial Siderosis Symposium 2025
2025-06-11 08:00 - 2025-06-13 17:00 (America/Halifax)
Join the Superficial Siderosis Research Alliance (SSRA) for a three-day symposium dedicated to patients, caregivers, clinicians, and researchers focused on advancing care, treatment, and research for superficial siderosis.

Community Conversation: The Living Rare Study
2025-06-12 16:00 - 17:00 (America/Edmonton)
Join NORD on Thursday, June 12 at 4 p.m. ET for a virtual conversation about the #LivingRareStudy. This session will guide you through joining the first large-scale study in the U.S. focused on tracking the real-life experiences of individuals and caregivers impacted by #RareDiseases, including how to create an #IAMRARE account, review the consent form, and navigate the platform.

FSHD Connect Europe patient meeting 2025​​​​​​​​​​​​​​​​​
2025-06-13 08:00 - 2025-06-15 17:00 (Atlantic/Azores)
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe.

Webinar - Key Considerations for Including Pediatric Populations with Neurodevelopmental Conditions in Clinical Trials
2025-06-18 12:00 - 13:00 (America/Edmonton)
Speakers: Evdokia Anagnostou and Mayada Elsabbagh Title: Key considerations for including pediatric populations with neurodevelopmental conditions in clinical trials

ALS Canada: Webinar-Driving Progress Forward
2025-06-18 12:30 - 14:00 (America/Edmonton)
In anticipation of Global ALS Awareness Day on June 21, join ALS Canada’s CEO Tammy Moore and the ALS Canada Team for a free, insightful webinar. Discover the comprehensive services and programs ALS Canada offers to Canadians living with and affected by ALS.
This engaging session will cover all mission areas, including community services, advocacy, research, and knowledge exchange, showcasing the extensive resources available nationwide.

The Cambridge Rare Disease Showcase
2025-06-18 18:30 - 21:00 (Europe/London)
This annual event celebrates the innovative work and powerful stories emerging from the rare disease community – uniting patient groups, researchers, clinicians, industry professionals, and more from across the UK and beyond.

Mito Med 2025 Masterclass on Primary Mitochondrial Myopathy with a Focus on TK2d
2025-06-21 08:00 - 17:00 (America/Kentucky/Louisville)
New this year for Clinical-Scientific Attendees to UMDF’s #MitoMed Conference — a Masterclass on Primary Mitochondrial Myopathy (#PMM) with a Focus on #TK2d. Tracks for Early Career Investigators and for Up-and-Coming Clinicians.

Defeat Duchenne Canada-Industry Partner Update: REGENXBIO
2025-06-23 16:00 - 17:00 (America/Edmonton)
Join Defeat Duchenne Canada for an educational webinar featuring Dr. Jahannaz Dastgir, Executive Director of Clinical Development at REGENXBIO, as she shares the latest updates on RGX-202, an investigational gene therapy for the treatment of Duchenne muscular dystrophy, and their Phase 1/2/3 AFFINITY DUCHENNE® trial.
This session will provide valuable insights into the science behind RGX-202, trial progress, and what this potential investigational treatment could mean for the Duchenne community. Whether you are a parent, caregiver, clinician, or advocate, this webinar is an opportunity to stay informed and ask questions directly to the team leading this important research.

THE FESTIVAL OF GENOMICS & BIODATA Boston
2025-06-24 08:00 - 2025-06-25 17:00 (America/New_York)
The Festival is designed principally for scientists and clinicians who are working in the fields of genomics, other omics, and/or using biodata , to further research, drug discovery, healthcare and – ultimately – deliver better patient outcomes.

Topics covered include genomics, single cell/spatial biology, multiomics, biodata, cancer research, drug discovery, AI, microbiome, proteomics, liquid biopsy and so much more.
