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 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 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
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
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
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
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
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
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
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 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
2/2: ...RareKids-CAN Network Director, Breanne Stewart; and RareKids-CAN regulatory expert, Lori Anderson. If you missed these webinars, you could watch them anytime at tinyurl.com/yzkvt3kv
#RareKidsCAN #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
Explore resources and learn more: worldperiodicparalysisday.com
#RareKidsCAN #PeriodicParalysis #RareDiseaseAwareness #RareDisease #RareDiseaseResearch
You can learn more about this exciting announcement on the RareKids-CAN news page: tinyurl.com/mrx47zep
#RareKidsCAN #RareDiseaseResearch #RareDiseaseAdvocacy
RareKids-CAN thanks all the women involved with our network for sharing their expertise, knowledge and experiences to help us continue improving access to clinical trials and innovative treatments for pediatric rare diseases across Canada! #IWD2025 #RareKidsCAN
You can learn more about our work at tinyurl.com/5xftr264 #RareKidsCAN #RareDiseaseResearch
@stemcellnetwork.bsky.social @thesumairafdn.bsky.social @erdera.bsky.social @hme-mch.bsky.social
