@rarekidscan.bsky.social
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
#RareKidsCAN #ChildHealth #RareDisease #Collaboration
October 24, 2025 at 6:46 PM
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
#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
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
October 10, 2025 at 5:41 PM
🎥 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
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 rkengage@mcmaster.ca.
October 2, 2025 at 9:21 PM
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 rkengage@mcmaster.ca.
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
September 29, 2025 at 10:01 PM
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
#RareKidsCAN #RareDiseaseResearch
September 25, 2025 at 8:43 PM
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
#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
#RareKidsCAN #RareDiseaseResearch #ClinicalTrials
September 18, 2025 at 9:27 PM
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
#RareKidsCAN #RareDiseaseResearch #ClinicalTrials
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
#RareKidsCAN #PatientEngagement #FamilyEngagement
September 16, 2025 at 3:48 PM
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
#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
#RareKidsCAN #RareDiseaseResearch
September 11, 2025 at 7:38 PM
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
#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
#PediatricRareDisease #RareDiseaseResearch #RareDiseaseClinicalTrials #RareDiseaseAdvocacy
September 8, 2025 at 7:23 PM
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
#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
#RareDiseaseResearch
September 4, 2025 at 7:53 PM
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
#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
#RareKidsCAN #PediatricRareDisease #ClinicalTrials
August 27, 2025 at 2:54 PM
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
#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
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch
August 20, 2025 at 5:28 PM
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
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch
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
#LivingWithRare #PatientAdvocacy
August 12, 2025 at 11:44 PM
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
#LivingWithRare #PatientAdvocacy
We're excited to share that a CIHR Project Grant will support new work on rare disease patient registry recommendations, led by Dr. Andrea Tricco and PhD student Catherine Stratton—also a key member of the RareKids-CAN Registry Sub-Platform. Congrats, Catherine! Learn more: tinyurl.com/k65rhhf5
August 6, 2025 at 3:59 PM
We're excited to share that a CIHR Project Grant will support new work on rare disease patient registry recommendations, led by Dr. Andrea Tricco and PhD student Catherine Stratton—also a key member of the RareKids-CAN Registry Sub-Platform. Congrats, Catherine! Learn more: tinyurl.com/k65rhhf5
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
#PediatricRareDisease
August 1, 2025 at 10:01 PM
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
#PediatricRareDisease
We're excited to spotlight patient partner, Maureen Smith, who shares her story & calls for faster, better access to clinical trials in Canada. Thank you, Maureen, for pushing for change & better access! Read full story: tinyurl.com/39wcjtaj
#RareKidsCAN #RareDiseaseResearch #RareDiseaseAdvocacy
#RareKidsCAN #RareDiseaseResearch #RareDiseaseAdvocacy
July 23, 2025 at 8:18 PM
We're excited to spotlight patient partner, Maureen Smith, who shares her story & calls for faster, better access to clinical trials in Canada. Thank you, Maureen, for pushing for change & better access! Read full story: tinyurl.com/39wcjtaj
#RareKidsCAN #RareDiseaseResearch #RareDiseaseAdvocacy
#RareKidsCAN #RareDiseaseResearch #RareDiseaseAdvocacy
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
#RareKidsCAN #PediatricRareDisease #ClinicalTrials #RareDiseaseResearch
July 12, 2025 at 12:09 AM
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
#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
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #GeneticDisorders
July 2, 2025 at 6:08 PM
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
#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
#PediatricRareDisease #RareDiseaseResearch #RareDiseaseClinicalTrials #RareDiseaseAdvocacy
June 24, 2025 at 2:24 PM
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
#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
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseClinicalTrials
June 18, 2025 at 3:15 PM
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
#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
#PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity
June 10, 2025 at 6:12 PM
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
#PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity
Join @trekkca.bsky.social's Steering Committee and help shape the future of children’s emergency care across Canada. Apply by June 13! To learn more, follow this link: tinyurl.com/38etwtmc
#EmergencyMedicine #PediatricHealth #TREKK
#EmergencyMedicine #PediatricHealth #TREKK
June 3, 2025 at 3:07 PM
Join @trekkca.bsky.social's Steering Committee and help shape the future of children’s emergency care across Canada. Apply by June 13! To learn more, follow this link: tinyurl.com/38etwtmc
#EmergencyMedicine #PediatricHealth #TREKK
#EmergencyMedicine #PediatricHealth #TREKK
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
#RareKidsCAN #PediatricRareDisease #WorldChildrensDay
May 29, 2025 at 6:31 PM
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
#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
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseClinicalTrials #RareDiseaseAdvocacy
May 27, 2025 at 8:21 PM
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
#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
🗓️ Closes June 6, 2025
🔗 tinyurl.com/4j9mfmtp
#PediatricRareDisease #Canada4Rare #RareKidsCAN #CORD
May 22, 2025 at 4:47 PM
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
🗓️ Closes June 6, 2025
🔗 tinyurl.com/4j9mfmtp
#PediatricRareDisease #Canada4Rare #RareKidsCAN #CORD