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/...

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

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

RareKids-CAN is committed to enabling timely access to pediatric rare disease therapies in Canada. Our third strategic priority is all about driving regulatory reform and system innovation. Read more here static1.squarespace.com/static/662c1... #RareDiseaseResearch #PediatricRareDiseases

Genevieve Currie and Leah Sarah Peer have been selected to join the James Lind Alliance Steering Committee. They will bring lived experience directly into conversations that define future research priorities Read more: www.rarekidscan.com/news/why-car... #RareDisease #PediatricRareDisease

Last month, the RareKids-CAN community came together to celebrate Rare Disease Day 2026 with events across the country Read more about the impact and activities here:
www.rarekidscan.com/news/rare-di... #RareDiseaseDay #PediatricRareDisease

RareKids-CAN's second strategic priority aims to optimize participant, site, and trial matching. Read more here: static1.squarespace.com/static/662c1... #RareDiseaseResearch #PediatricRareDiseases #ClinicalTrials

RareKids-CAN participated in the ERDERA meeting in Sofia 🇨🇦🌍 Presentations highlighted how Canada connects research, policy, and patient voices -- while engaging global partners in pediatric rare disease research and care. Read more: www.rarekidscan.com/news/strengt... #RareDisease #GlobalHealth

RareKids-CAN leaders Breanne Stewart & Dr. Thierry Lacaze shared a vision for advancing pediatric clinical trials at the ACCESS Annual Meeting in Toronto. Read more: www.rarekidscan.com/news/rarekid... #PediatricResearch #ClinicalTrials #RareDisease #ATMP

Following the release of our Strategic Plan, RareKids-CAN is sharing our first strategic priority: Strengthening PRDCTs Capacity and ATMPs Readiness. Read more here: static1.squarespace.com/static/662c1... #RareDiseaseResearch #PediatricRareDiseases #ClinicalTrials

New legislation introduced in Parliament today aims to improve access to essential medications not available in Canada. Learn more about the tabled bill here: www.rarekidscan.com/news/rarekid... #HealthPolicy #AccessToMedicines #RareDisease #CDNPoli

We’re pleased to share the revised 2025-2029 Strategic Plan! We’re grateful to our patient and family partners, researchers, institutions, and collaborators who shaped this evolution. Read the full plan here: static1.squarespace.com/static/662c1... #RareDiseaseResearch #PediatricRareDiseases

This International Women’s Day, we celebrate the women driving change in pediatric rare disease research. At RareKids-CAN, we’re proud to work alongside extraordinary women across Canada who are accelerating the rare disease space. #InternationalWomensDay #IWD2026 #PediatricRareDisease

If you're a rare disease methodologist, investigator, or trainee, join us on Mar 11 at 1pm EST for a Rare Methods Workshop on Expert Elicitation in Rare Disease Research. We hope to see you there! Register today: us02web.zoom.us/meeting/regi... #RareDisease #ClinicalResearch #ResearchWorkshop

Pediatric rare diseases may affect small numbers at a time, but together they represent a major challenge. With RareKids-CAN, McMaster researchers & family leaders are building a more coordinated national approach to rare disease trials. pediatrics.healthsci.mcmaster.ca/mcmaster-exp...

Institutions across Canada are raising awareness of Rare Disease Day on February 28th. BC Children’s Hospital, the University of Alberta, and the Canadian Rare Disease Network are all hosting events. To register or learn more visit www.rarekidscan.com/events #RareDiseaseDay #PediatricRareDisease

Feb 28 is Rare Disease Day. 400M people worldwide are impacted by rare diseases, 200M are children. RareKids-CAN is accelerating access to pediatric rare disease trials and treatments across Canada. Find out how at www.rarekidscan.com #RareDiseaseDay #HealthEquity #PediatricRareDisease

Are you a rare disease methodologist, investigator or trainee? Join us for a Rare Methods Workshop on expert elicitation in rare disease research on March 11 at 1pm EST. Register today: us02web.zoom.us/meeting/regi... #RareDisease #ClinicalResearch #ResearchMethods

Did you miss our most recent webinar? Watch the recording of From Evidence to Access: Advancing Pediatric Rare Disease Drug Availability in Canada with Matthew McDonald, Douglas Clark, Maryam Oskoui, and Marc-André Gagnon here: www.rarekidscan.com/training-and...

Open Call! RareKids-CAN, in partnership with MICYRN, is offering sponsored virtual attendance to the 2026 @asgct.bsky.social Annual Meeting to support workforce development in pediatric ATMP clinical trials.  Apply by Feb. 12 at 9am PST

Join us on Feb 4 for From Evidence to Access:
Advancing Pediatric Rare Disease Drug Availability in Canada. Matthew McDonald & Douglas Clark will discuss the evolving role of HTA and reimbursement policy in #pediatric #raredisease care. Register here: us02web.zoom.us/meeting/regi...

As 2025 wraps up, we’re reflecting on a year of growth at RareKids-CAN.   Read our latest newsletter to learn more about this year’s growth, collaboration, and progress: mailchi.mp/micyrn/rarek...

Join us for a virtual Rare Methods workshop. This session covers why external controls are used in pediatric rare-disease trials, key data sources, core biostatistical concepts for data integration, and more.   Register us02web.zoom.us/meeting/regi...   #RareDiseaseResearch #ClinicalTrials

RareKids-CAN joined SickKids Child Health Policy Accelerator & IMPaCT in Ottawa for Parliamentary Meetings with Minister Marjorie Michel to advance child health across Canada. Change happens when families, researchers & policymakers come together #RareKidsCAN #ChildHealth #RareDisease #Collaboration

🎥 Join our Digital Storytelling Workshop on Oct 16 at 8 P.M. EST! Learn how personal stories empower rare communities with Krystle Schofield—RareKids-CAN parent partner, B.C. mom, facilitator + photographer. 🔗 Register: zoom.us/meeting/regi... #RareDisease #RareKidsCAN

Thank you to all who attended Family Engagement in Research Fundamentals! This session highlighted the fundamentals of patient and family engagement in research and how to strengthen engagement practices. For any questions or to learn more, please contact Sara and Alicia at [email protected].

By embedding Indigenous voices, priorities, and knowledge into research, the Indigenous Community Engagement team is advancing cultural safety, trust, and equity in rare disease care and clinical trials. See how they’re driving change: tinyurl.com/2umpcfwt

Thank you to our #biostatistics team for hosting the 1st webinar in our new Rare Methods Workshop series, Bayesian Approaches to Pediatric Rare Disease Clinical Trials, and to our 80+ attendees! Missed it? No problem! Access the recording here: tinyurl.com/26h53pbe #RareKidsCAN #RareDiseaseResearch

We're proud to partner with @impactrials.bsky.social to co-fund 2 training awards for projects focused on rare diseases with dedicated funding for Black and Indigenous applicants. Learn more and apply for a training award today: tinyurl.com/mrt5kd6j #RareKidsCAN #RareDiseaseResearch #ClinicalTrials

Join us soon for this education session: tinyurl.com/3kz64jwj

Join us on Sept. 17, 2025, from 2-3pm ET for our next education session, led by our Patient and Family Engagement Facilitators. This session is open to everyone interested in strengthening engagement practices. Don't miss out: tinyurl.com/3kz64jwj #RareKidsCAN #PatientEngagement #FamilyEngagement

Join RareKids-CAN for the first session in our new Rare Methods workshop series, “Bayesian Approaches to PRDCTs”, on September 16, 2025 from 1-2 PM ET. You can learn more about this session and register here: tr.ee/mH0nGPmnLe #RareKidsCAN #RareDiseaseResearch

A research team at the University of Alberta is looking to hear feedback from parents of children with intellectual developmental disorders (IDD) on a new resource. Learn more at tinyurl.com/4bfmttyp #PediatricRareDisease #RareDiseaseResearch #RareDiseaseClinicalTrials #RareDiseaseAdvocacy

The #RareKidsCAN Pharmacology Sub-Platform is organizing focus groups to better understand the experiences of patients and families when searching for information about medications & #ClinicalTrials for #PediatricRareDiseases. Learn how to get involved: tinyurl.com/2sdkbz2t #RareDiseaseResearch

Researchers at Holland Bloorview are exploring whether sertraline can help reduce anxiety in children and youth with neurodevelopmental conditions. Find out more about how to get involved in this participation opportunity: tinyurl.com/4bfmttyp #RareKidsCAN #PediatricRareDisease #ClinicalTrials

Earlier this year, Dr. Thierry Lacaze and Breanne Stewart attended the 6th Nordic Conference on Pediatric and Orphan Medicines in Helsinki, Finland. Learn more about how we're making an international impact: tinyurl.com/2uewjy89 #RareKidsCAN #PediatricRareDisease #RareDiseaseResearch

🎉 Exciting news! We're partnering with RareKids-CAN to co-fund two training awards for projects focused on rare diseases, including a dedicated award for Black or Indigenous applicants. ➡️ Learn more and apply: www.impactrials.ca/awardinfo

August 12 is #InternationalYouthDay! This year, we’re celebrating Simone, a dedicated #YouthPartner with #RareKidsCAN who’s making a difference in the #RareDiseaseCommunity. Discover Simone’s journey and how she became involved with our work: tinyurl.com/nhhhtchu #LivingWithRare #PatientAdvocacy