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
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
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
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
Rare Disease Day 2026 : Raising awarness for the 200 million children impacted by a rare disease
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
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
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
In June 2025, our Nominated Principal Investigator, Dr. Thierry Lacaze, and Network Director, Breanne Stewart, represented #RareKidsCAN at the in-person @erdera.bsky.social workshop held in Latvia. Read more about our exciting international collaboration: tinyurl.com/mr28fd7p
#PediatricRareDisease
Join @impactrials.bsky.social for their upcoming webinar on July 21 from 12pm-1pm ET to learn more about current and future clinical trials in children from a European perspective. Register today: tinyurl.com/29yadvre
#RareKidsCAN #PediatricRareDisease #ClinicalTrials #RareDiseaseResearch
RareKids-CAN is proud to share the success story of a single patient study for a baby girl with a rare and severe immune disorder caused by a genetic mutation. Read more about this exciting development: tinyurl.com/mt9333hy
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #GeneticDisorders
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
Check out the new participation opportunities section on our website! On this page, you can learn more about each project, who the investigators are, and if you are eligible to participate: tinyurl.com/4bfmttyp
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseClinicalTrials
Join @impactrials.bsky.social & CanNRT on June 18 (12-1pm ET) for a webinar on including pediatric populations with neurodevelopmental conditions in clinical trials. Register: tinyurl.com/5s33huw3
#PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity
June 1st is International Children's Day. RareKids-CAN supports and improves the health and wellness of all children with a rare condition through access to treatments and clinical trials in Canada. Read more about us here: tinyurl.com/555rpch7
#RareKidsCAN #PediatricRareDisease #WorldChildrensDay
A research project at the University of Toronto is looking to recruit caregiver participants. Share your experiences on treatment & access by contacting Paige at yunting.chu@mail.utoronto.ca.
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseClinicalTrials #RareDiseaseAdvocacy
If you’re living with or caring for someone with a rare disease, your voice can help show the real impact on families across Canada. Complete this 10-min survey and help shape better policies.
🗓️ Closes June 6, 2025
🔗 tinyurl.com/4j9mfmtp
#PediatricRareDisease #Canada4Rare #RareKidsCAN #CORD
You can learn more about our work at tinyurl.com/555rpch7
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity #RareDiseaseAdvocacy
You can learn more and register here: tinyurl.com/2enxbrph
#IMPaCTtrials #HealthWebinar #PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity
You can read the full conference recap on our news page: tinyurl.com/4e7674jp
#RareKidsCAN #RareKidsCANConference2025 #PediatricRareDisease #RareDiseaseResearch #RareDiseaseAdvocacy
Today, we honour the strength and resilience of this global patient community as they continue to work towards improving diagnostics and care.
#RareKidsCAN #PediatricRareDisease #PediatricStroke #Neurosurgery #Moyamoya
We would also like to thank this year’s conference sponsor, Innovative Medicines Canada, for their support! Thank you!
#RareKidsCAN #RareKidsCANConference2025 #PediatricRareDisease #RareDiseaseResearch #RareDiseaseAdvocacy
#RareKidsCAN #RareKidsCANConference2025 #PediatricRareDisease #RareDiseaseResearch #RareDiseaseAdvocacy
You can learn more about our network and our initiatives at: www.rarekidscan.com
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseAdvocacy
We had attendees come from a wide range of backgrounds, including academic researchers (60%), and caregivers and family members (13%). Thank you!
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity
