Registration is now open for the Inaugural Canadian Gene & Cell Therapy Conference! This landmark event will bring together researchers, clinicians, manufacturers, industry leaders, regulators, trainees, and patient/family partners to shape the future of gene and cell therapy in Canada. cangct.ca
RareKids-CAN
@rarekidscan.bsky.social
RareKids-CAN is a diverse coalition of partners aimed at streamlining and accelerating rare disease clinical trials and access to innovative treatment for all patients and families in Canada. RareKids-CAN is funded by the CIHR.
This spring, RareKids-CAN supported Patient and Family Engagement Sub-Platform Lead Sara Pot's participation in the EURORDIS-Rare Diseases Europe Open Academy in Barcelona. Read her reflections here: lnkd.in/gg8Bimbm
🍁 Happy Canada Day! 🍁 Working together across Canada, we're supporting research and clinical trials that help improve the future for children living with rare diseases. #CanadaDay #RareDisease #ClinicalTrials
Our latest article shares key takeaways from #ASGCT2026 from two of RareKids-CAN Clinical Trial Navigators, Cara Grobbecker and Faiza Khawaja. Read more: www.rarekidscan.com/news/key-tak...
Key Takeaways from the American Society of Gene & Cell Therapy 2026 — RareKids-CAN
RareKids-CAN was pleased to sponsor two of our Clinical Trial Navigators, Cara Grobbecker and Faiza Khawaja to attend the American Society of Gene & Cell Therapy (ASGCT) 2026 Annual Meeting virtua...
rarekidscan.com
Join us on July 22nd for our next ATMP webinar: Delivering Gene Therapy Trials: Understanding Clinical Workflows, Operations, and the Patient Journey Register here: us02web.zoom.us/webinar/regi...
On National Indigenous Peoples Day, we recognize and celebrate the histories, cultures, traditions, and contributions of First Nations, Inuit, and Métis Peoples. #NationalIndigenousPeoplesDay #NIPD2026
This Father's Day, RareKids-CAN recognizes and celebrates the fathers and caregivers who support children and youth living with rare diseases.
Dr. Beth Potter and Dr. Catherine Strandt spoke at the @erdera.bsky.social WP23 Workshop, bringing Canadian perspectives to a global conversation on rare disease registries. Read more here: www.rarekidscan.com/news/canadia...
Canadian National Mirror Group Contributes to International Discussion on Rare Disease Registries — RareKids-CAN
The Canadian National Mirror Group, led by RareKids-CAN, is helping ensure Canadian perspectives are represented in international efforts to strengthen rare disease research and data infrastructure.
rarekidscan.com
New publication from the RareKids-CAN Pharmacology Sub-Platform! The paper provides a guide to cell and gene therapies in pediatric rare disease research, covering clinical pharmacology, trial design, and regulatory considerations. Read more: www.rarekidscan.com/news/new-pap...
New Paper Provides Practical Guide to Cell and Gene Therapies in Pediatric Rare Disease Research — RareKids-CAN
Cell and gene therapies are rapidly transforming the pediatric rare disease treatment landscape and are offering new possibilities for conditions that have historically had few or no effective treatme...
rarekidscan.com
Global collaboration was a key theme at the World Orphan Drug Congress USA, where RareKids-CAN Nominated Principal Investigator and MICYRN Scientific Director Dr. Thierry Lacaze participated in a keynote panel exploring advances in rare disease research. www.rarekidscan.com/news/thierry...
Thierry Lacaze Highlights the Importance of Global Collaboration at the World Orphan Drug Congress USA — RareKids-CAN
RareKids-CAN Nominated Principal Investigator and MICYRN Scientific Director Dr. Thierry Lacaze recently joined international leaders in a rare disease research, regulation, and drug development in Bo...
rarekidscan.com
Last chance to register! Join us Monday, June 15 for a practical ATMP primer for clinical coordinators, nurses, and pharmacists working in pediatric rare disease trials. 📅 June 15 ⏰ 3 - 4 PM ET ➡️ Register here: us02web.zoom.us/webinar/regi... #PediatricRareDisease #RareDiseaseResearch
LAST CHANCE TO REGISTER: Join us tomorrow (June 2nd) for From Evidence to Access: Do Lived and Clinical Experiences Shape HTA Decisions? RSVP: us02web.zoom.us/webinar/regi... #PediatricRareDisease #HTA #ClinicalResearch
Improving access to pediatric rare disease #clinicaltrials requires more than research — it takes coordination, collaboration, and national readiness. Read our Q&A with Davy Eng, RareKids-CAN Clinical Trial Navigator here: www.rarekidscan.com/news/buildin... #RareDisease #PediatricResearch
Join us June 15th for a practical introduction to Advanced Therapy Medicinal Products (ATMPs) for clinical coordinators, nurses, pharmacists, and research staff working in pediatric rare disease trials. Register now: us02web.zoom.us/webinar/regi... #pediatricraredisease #rarediseaseresearch
Our latest article features Dr. Stuart Turvey and Dr. Elie Haddad on how collaboration, clinical trials, precision health, and gene editing are helping transform pediatric rare disease research and access to treatment. www.rarekidscan.com/news/rewriti...
Rewriting Rare Disease Care: How Collaboration and Clinical Trials Are Transforming Pediatric Research and Access to Treatment — RareKids-CAN
Canada is entering a new era in pediatric rare disease research, driven by advances in precision medicine and novel, innovative clinical trial approaches, including gene editing and gene therapies.
rarekidscan.com
As part of our #ClinicalTrialsDay Q&A series, RareKids-CAN Clinical Trial Navigator Daislyn Vidal shares insights on supporting families and helping improve access to #pediatricraredisease clinical trials. Read the Q&A here www.rarekidscan.com/news/connect...
RareKids-CAN was proud to host our Canadian MEET & GREET at #ASGCT2026 in Boston and connect with colleagues and collaborators from across Canada advancing gene and cell therapy research. Stay tuned for details on our inaugural Canadian Gene & Cell Therapy conference coming in early 2027.
Thank you to everyone who joined our Bill C-265 webinar yesterday. It sparked thoughtful conversation and shared commitment to advancing more efficient, patient-centred pathways to care. One way to take action now: support the campaign by sending a letter to your MP: politraq.ca/activations/...
PoliTraQ — Track Your Advocacy Impact
Government affairs CRM for tracking stakeholder engagements, monitoring legislation, and measuring advocacy impact across Canadian jurisdictions.
politraq.ca
Join us June 2 for From Evidence to Access: Do Lived and Clinical Experiences Shape HTA Decisions? Register here: us02web.zoom.us/webinar/regi...
Don’t forget to register: Join us May 14th for a webinar about Bill C-265. Learn more: us02web.zoom.us/webinar/regi...
Canadian attendees of the 2026 American Society of Gene & Cell Therapy Annual Meeting -- let's connect! 🇨🇦 Join us for a Canadian meet and greet to connect with colleagues, collaborators, and others from across Canada. Register here: luma.com/uz5kq3gp #ASGCT2026 #genetherapy #celltherapy
MEET & GREET: Get together for Canadian Participants at ASGCT 2026 · Luma
Join fellow Canadian researchers, clinicians, industry, and partners attending ASGCT 2026 for an informal meet & greet. This is a great opportunity to connect,…
luma.com
Families are key partners in pediatric rare disease research. Through the FER Course, members of the RareKids-CAN community strengthened their skills and confidence to collaborate meaningfully. Read more: www.rarekidscan.com/news/strengt... #RareKidsCAN #FamilyEngagement #PatientPartnership
Applications are now open for the Canadian Rare Disease Network (CRDN) RAREvolution Scholarship! This scholarship supports students aged 17 to 29 living with a diagnosed or suspected rare disease as they pursue post-secondary education in Canada. Learn more:: canadianrdn.ca/scholarship/
Today is Undiagnosed Day, a moment to recognize the thousands of children’s and families still searching for answers. At RareKids-CAN, we know that diagnosis is more than a milestone, it’s the gateway to care, clinical trials, and treatments. #UndiagnosedDay #PediatricRareDisease #ClinicalTrials
Join us in supporting improvements to treatment access in Canada by writing to your MP in support of Bill C-265. politraq.ca/activations/... #BillC265 #HealthPolicy #HealthcareAccess #CanadianHealthcare #HealthAdvocacy
Join us May 14th to discuss Bill C-265 and what it could mean for access to treatment in Canada. Register here: us02web.zoom.us/webinar/regi... #BillC265 #HealthPolicy #HealthcareAccess #CanadianHealthcare #HealthAdvocacy
Congratulations to Busisiwe Zapparoli and Wallace Wee, IMPaCT–RareKids-CAN trainees! Read how Busisiwe Zapparoli is improving outcomes for patients: www.rarekidscan.com/news/impact-... Read how Wallace Wee is advancing pediatric lung disease research: www.rarekidscan.com/news/impact-...
Congratulations to Cara Grobbecker and Faiza Khawaja, the awardees of RareKids-CAN’s sponsored opportunity to attend the @asgct.bsky.social Annual Meeting. #RareDisease #ClinicalTrials #Pediatrics #HealthInnovation
It's World Health Day and RareKids-CAN is proud to stand behind this year’s theme: Together for health. Stand with science. Today, we celebrate the power of collaboration and recommit to building a future where every child benefits from the best that science and healthcare can offer. #WorldHealthDay
RareKids-CAN Nominated Principal Investigator Thierry Lacaze, delivered the keynote address at the @rare-qc.bsky.social Scientific Day. He underscored our initiatives and highlighted the critical role of advancing research + collaboration in the pediatric rare disease space. #PediatricRareDisease