🎥 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

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

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

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

Join us for our next IMPaCT webinar! An Overview of Current and Future Clinical Trials in Children: A European Perspective. 🗓️ July 21, 2025 | 🕛 12:00–1:00 PM ET | 💻 Held via Zoom 🔗 Register here: www.impactrials.ca/events/july-...

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

Join us Wednesday, June 4th for the AVA Webinar Series: Exploring Adversity, Inequities, and Resilience Among Indigenous Women and Gender-Diverse People with Dr. Malcolm King from the University of Saskatchewan. 12 – 1:30pm MST avatraining.ca/webinars/

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

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 [email protected]. #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

May 20th is International Clinical Trials Day. RareKids-CAN is dedicated to supporting the design, development, management, and execution of pediatric rare disease clinical trials in Canada, today and every day!

Join @impactrials.bsky.social on May 22nd for their upcoming webinar: “Pediatric Behavioral Trials: Core Concepts and Practical Strategies for Families”. Everyone is invited to attend, and feel free to share this opportunity with your colleagues and networks!

Last month, the RareKids-CAN community came together to connect, collaborate, and learn - both in-person in Ottawa and virtually from coast to coast and beyond!

Join RareKids-CAN in acknowledging World Moyamoya Day - a day dedicated to raising awareness and knowledge about moyamoya, a rare and progressive condition affecting the arteries in the brain.

A research study at the University of Toronto is looking to recruit caregiver participants. If you’re 18 or older, can participate in English, and have experience caring for a rare disease patient receiving a plasma-derived medicinal product, the study team would love to hear from you.

We're thrilled to announce the second cohort of IMPaCT Fellows! Join us in welcoming this group of Doctoral Students, Postdoctoral Fellows, and Early Career Researchers 🎉

Would you like to help influence how the latest knowledge in children’s emergency care is mobilized across Canada? @trekkca.bsky.social is looking for volunteers to serve on its Board of Directors! Please see the image for more details and to learn how to apply.

📢 Exciting news! Mark your calendars for the Canadian Rare Disease Innovation Showcase on April 28th happening at the Westin Hotel in downtown Calgary and virtually (ZOOM) from 4:00-8:15PM MST!

Did you know there are at least 145 rare genetic diseases that cause dementia-like symptoms in [email protected] @rarekidscan.bsky.social @facmed-umontreal.bsky.social tinyurl.com/2cj6wptz

We would like to thank all who attended this year’s RareKids-CAN conference in Ottawa! It was wonderful to see everyone come together both in-person and virtually to connect and learn.

The RareKids-CAN conference begins today! This year’s conference is proudly supported by Innovative Medicines Canada – thank you for your support! We look forward to bringing together our community to network, connect and learn.

April 7th is #WorldHealthDay! Today, and every day, RareKids-CAN works to champion pediatric rare disease research and advocacy through improving access to clinical trials and treatments within Canada.

RareKids-CAN is thrilled to see how successful last month's Rare Disease Day was across Canada! Clinical Trial Navigator, Cara Grobbecker, from London Health Sciences Centre shared:

1/2: ICYMI: earlier this winter, @impactrials.bsky.social hosted two webinars on securing funding for clinical trials & initiating clinical trials in Canada. RareKids-CAN Nominated Principal Investigator and Scientific Director of MICYRN, Dr. Thierry Lacaze-Masmonteil led these webinars;...

HAPPY #MOG AWARENESS MONTH 🩷🧡💛 🦄 To learn more about #MOGAD, read patient stories and connect with a TSF Ambassador, visit www.sumairafoundation.org

We would like to thank everyone who attended and presented at our virtual round-up event this week on March 24, 2025! It was wonderful to connect with everyone to share our network’s progress, each sub-platforms’ activities and goals, and what’s to come!

March 23, 2025, is the first-ever #WorldPeriodicParalysisDay! RareKids-CAN is proud to support this important day dedicated to raising awareness and understanding of periodic paralysis.

Save the date! RareKids-CAN is inviting you to join our virtual roundup session on March 24, 2025 from 8-11am MST. During this information session, you will gain an overview of RareKids-CAN, build connections within the community, and more! Register today: tinyurl.com/yhy455b2

📣 #IRDiRC Therapies Scientific Committee (TSC) is seeking 3 new experts in rare disease therapy development! 📩 Apply by sending your CV, biosketch, and letter of motivation to: [email protected] 📅 Deadline: 6 April 2025 🔗 More details loom.ly/Zyg_GDk

In December 2024, ECRIN and MICYRN signed a Memorandum of Understanding (MoU) to enhance their collaboration and jointly support international trials.

Save the date! @rarekidscan.bsky.social is inviting you to join our virtual roundup session on March 24, 2025 from 8-11am MST. During this information session, you will gain an overview of RareKids-CAN, build connections within the community, and more! Register today: tinyurl.com/yhy455b2

Recording available 🎥 Don’t miss insights from Breanne Stewart and Lori Anderson as they discuss: ➡️ Navigating the Canadian clinical trial environment ➡️ Practical methods for developing detailed trial plans & budgets ➡️ Support networks and resources available in Canada Check it out now!