people_banner_v1-1-scaled

Events

Welcome to our Events Calendar! Stay up-to-date with the latest happenings in the rare disease community in Canada and beyond. From webinar and conferences to workshops and other events, our calendar is your one-stop destination for all rare disease-related happenings. Explore upcoming events, mark your calendar, and join as we work together to make a difference in the lives of those affected by rare diseases.

Watch our walkthrough videos in English and French for guidance navigating the calendar HERE. 

Week in RARE: RARE Advocacy Summit and Health Equity Forum

Kansas City Kansas City, MO, United States

Global Genes is on the move — Week in RARE is moving to Kansas City, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is […]

2024 Global CMT Research Convention

Cambridge Cambridge, MA, United States

The CMT Research Foundation unites the voices of patients, researchers, pharma companies, and regulatory agencies to develop treatments for CMT. This event takes place over three days. Thursday and Friday are scientific meetings meant for researchers and scientists working in CMT. Saturday is primarily for patients and their families and caregivers, providing a chance to […]

World Orphan Drug Congress 2024

Fira de Barcelona Montjuic Barcelona, Spain

The World Orphan Drug Congress is the largest, most established European meeting dedicated to orphan drugs. This year the conference will take place in Barcelona, Spain. From cell & gene therapy, genetic testing, market access to real world evidence, this one meeting covers the whole orphan drugs value chain where science, government and manufacturers all […]

Developing Therapies in Rare Neuromuscular Disease

The symposium is designed for industry professionals involved in developing treatments for rare neuromuscular diseases and offers a unique opportunity to learn from past mistakes, engage with leading experts, and gain valuable insights into the challenges and opportunities within the field. Attendees can expect interactive sessions and opportunities to pose questions to the speakers, fostering […]

Measuring the Value of Genomics in Healthcare

This virtual workshop will focus on exchanging strategies, tools and experience in measuring the value of genomic testing in healthcare. Demonstrating value is key in informing health technology assessments (HTAs), clinical practice and policy decisions and yet standardized outcome measures and frameworks are still in their infancy. The task of demonstrating value is further complicated […]

ALS Research and Clinical Trials 101 Q&A Drop-In

This monthly Q&A drop-in session is available for people living with ALS, their families, caregivers, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials.

Webinar on ”mental health and behavioral difficulties in children with rare neonatal surgical disease”

You are invited to join an insightful webinar hosted by ERNICA, eUROGEN, and EURORDIS on Mental health and behavioral difficulties in children with rare neonatal surgical disease: assessment, outcomes and implications for research, policy and practice'. This interactive session will raise awareness of the mental health and behavioral challenges faced by children with rare neonatal surgical […]

Genetic Rare Immune Disorders Symposium (GRIDS)

GRIDS brings together world renowned experts from across the globe to discuss recent developments and unique challenges in the field of lysosomal storage disorders and/or rare genetic diseases.

Child Health Hub in Transition to Adult Healthcare

The Child Health Hub in Transition to Adult Healthcare is excited to be hosting the 2nd Transition to Adulthood Pop-Up event on December 2-3, 2023, at the beautiful Hyatt Regency in downtown Vancouver. This event aims to bring together youth, families, trainees, researchers, clinicians, and policy/decision makers to celebrate the best of what we are […]

Share your Event

Do you have an upcoming event, webinar, or conference relevant to the rare disease community in Canada? We’d love to feature it on this page!

Help us expand our calendar and ensure that rare disease happenings are accessible to all. Submit your event details

HERE!

Skip to content