Events

Upcoming Events

Delivering Gene Therapy Trials: Understanding Clinical Workflows, Operations, and the Patient Journey

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Register here

July 22, 2026 | 12pm EDT | Virtual

Speaker: Ana Stosic, Manager - Genetic Medicine CTSU, SickKids

This webinar provides a practical overview of the clinical workflows involved in delivering gene therapy clinical trials for pediatric rare diseases.

Designed for research coordinators, nurses, pharmacists, investigators, and other clinical research professionals, the session will follow the patient journey from screening and baseline assessments through treatment administration, immediate monitoring, and long-term follow-up. Participants will gain insight into the operational milestones, interdisciplinary team roles, and coordination required to successfully deliver gene therapy trials. Through a patient-centered lens, attendees will explore how clinical, pharmacy, and research teams work together to support patients and families throughout the trial journey.

By the end of this session, participants will be able to:

  • Describe the key clinical and operational milestones involved in delivering gene therapy clinical trials

  • Explain the roles and responsibilities of interdisciplinary team members, including coordinators, nurses, pharmacists, investigators, and other support staff

  • Identify operational considerations associated with patient screening, baseline testing, product preparation and handling, treatment administration, and coordination between clinical and pharmacy teams

  • Differentiate between immediate post-treatment monitoring requirements and long-term follow-up obligations

  • Recognize the importance of effective interdisciplinary collaboration and communication in supporting safe, efficient, and patient-centered trial delivery

  • Understand the patient journey through a gene therapy clinical trial and identify key touchpoints where patient education, care coordination, and operational planning are critical to success

Behind the Scenes of ATMP Manufacturing: A Practical Guide for Coordinators, Nurses, and Pharmacists

This webinar will provide research coordinators, nurses, pharmacists, and clinical trial teams with a practical overview of the ATMP manufacturing landscape and the “behind-the-scenes” processes that support successful trial execution.

Participants will gain insight into how ATMPs are developed, manufactured, released, and quality controlled, as well as the operational considerations sites should understand when preparing to participate in pediatric rare disease ATMP clinical trials. The session will also explore key considerations for selecting and working with manufacturing partners, and how manufacturing timelines, logistics, and product handling can influence study coordination and patient care.

Learning Objectives By the end of this session, participants will be able to:

  • Describe the basic manufacturing, release, and quality control processes involved in ATMP production

  • Explain how manufacturing and supply chain considerations impact site readiness and clinical trial operations

  • Identify key operational and logistical considerations for research teams supporting ATMP clinical trials

  • Recognize important factors study teams should consider when evaluating or working with ATMP manufacturing partners

  • Understand the broader “behind-the-scenes” roadmap involved in bringing ATMPs from production to patient administration

Register here
Register here

September 10, 2026 | 11am EDT | Virtual

Speaker: Miruna Balasundaram, P.Eng, PMP, Head, Operations and Quality, ATMF, UBC; Head of Quality and Regulatory Affairs, CFIL-DRC, BC Cancer

Past Events

June 15, 2026: ATMP Webinar: A Practical Primer for Clinical Coordinators, Nurses & Pharmacists

This webinar was the first in a series organized under Key Initiative 1.3 of the RareKids-CAN strategic priority, ‘Strengthening Pediatric Rare Disease Clinical Trial Capacity and Advanced Therapy Medicinal Product Readiness.’

It provided a practical introduction to Advanced Therapy Medicinal Products (ATMPs) for clinical coordinators, nurses, pharmacists, and research staff working in pediatric rare disease trials. Participants gained a foundational understanding of gene therapies, cell therapies, and antisense oligonucleotides (ASOs) and how these trials differ from non-ATMP products or trials. 

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June 2, 2026: From Evidence to Access: Do Lived and Clinical Experiences Shape HTA Decisions?

How do lived experiences and frontline clinical insights influence health technology assessment (HTA) decisions in rare diseases?

This panel explored how patient and clinician voices are integrated into evidence frameworks. Through real-world examples, the discussion explored how HTA decisions can be more meaningfully anchored in lived and clinical experience.

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Rare Disease Day 2026

RareKids-Can’s pediatric research institutions and their affiliated hospitals hosted events throughout the day (and during the week leading up to it) to raise awareness for patients and families living with rare diseases, as well as the clinicians and researchers who support them.

May 14, 2026: Bill C-265 Webinar: Improving Access to Essential Medications in Canada

RareKids-CAN hosted a timely conversation with MP Marcus Powlowski (MP for Thunder Bay – Rainy River) alongside healthcare professionals and patient advocates from across Canada, on improving access to essential medications not currently available in the country..

Participants learned what the changes proposed in Bill C-265 could mean for patients, families, and healthcare providers.

March 24, 2025: RareKids-CAN Round Up: Overview, Updates, and Collaboration [VIRTUAL]

This virtual information session is an opportunity to:

  • Gain an overview of RareKids-CAN, including the current services we offer to support study teams

  • Learn about our deliverables and activities across each sub-platform and the Clinical Trial Operations and Coordinating Hub (CTOCH)

  • Share your feedback on the network

  • Build connections within the community