Canadian Rare Disease Network

Global Rare Diseases Research Symposium
2024-05-23 12:00 - 2024-05-25 18:30 (Asia/Shanghai) | Greenland International Convention Center, Shanghai, China
IRDiRC is co-hosting together with Hope for Rare Foundation and Fudan University, the Global Rare Diseases Research Symposium & The Second China Rare Disease Research and Translational Medicine Annual Conference on May 23-25 in Shanghai (China).
The conference will last for 2.5 days with 21 parallel sessions and several satellite meetings. It will bring together over 100 speakers from global universities, hospitals, academic institutions, and pharmaceutical companies. Topics will cover basic research on rare diseases, gene and cell therapies, Investigator Initiated Trials, clinical studies, drug development, and international research collaborations.

CureDuchenne FUTURES National Conference
2024-05-23 08:00 - 2024-05-26 17:00 (America/New_York) | JW Marriott Orlando, Orlando, FL, United States
The CureDuchenne FUTURES National Conference is an annual event focused on bringing education, connection, and hope to the entire Duchenne community.

A.I in Genomics
2024-05-22 12:00 - 13:00 (America/Creston)
A.I. in Genomics is a panel discussion and interactive Q & A with Dr. Orion Buske, Chief Technology Officer of PhenoTips and technical lead for multiple international standards and data sharing initiatives in genetics, and Dr. Mark Kiel, Chief Scientific Officer and founder of Genomenon, hosted by DNA Today’s Founder, Producer, and Host, Kira Dineen, CGC.

Clinical trials in rare disease: The role of patient registries
2024-05-22 10:00 - 11:00 (America/Edmonton)
Therapies for rare diseases are emerging at a rapid pace yet rigorous evidence regarding their safety, efficacy, and effectiveness in practice is often sparse and is difficult to generate. High quality longitudinal patient registries may help to address this evidence gap.

European Conference on Rare Diseases 2024
2024-05-15 08:00 - 2024-05-16 18:00 UTC | The Square, Brussels, Belgium
The European Conference on Rare Diseases and Orphan Products (ECRD) is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future.
With over 600 participants, the Conference is an unrivalled opportunity to network and exchange invaluable insights within the rare disease community. Through collaborative efforts, these discussions culminate in clear policy recommendations that can influence both EU and national policies.
The 12th ECRD is a fully hybrid conference taking place on 15 & 16 May 2024 online and at The Square in Brussels.

RARE Bootcamp
2024-05-14 08:00 - 2024-05-16 17:00 UTC
The RARE Bootcamp is designed for patients and advocates who have started funding rare disease research and are looking to better coordinate and build structure around their efforts. For more information or to register, please email bootcamp@ultragenyx.com

PxP Webinar 2 2024: Motivations for being a patient partner in research
2024-05-09 13:00 - 14:30 (America/New_York)
The webinar series is all about patient engagement in health research, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). ‘Patient engagement’ in health research is where patients are research team members. This is different from volunteering to be a research participant where you might help advance research or healthcare, but a research participant generally does not give input into the research study itself.
