We are proud to share that three #DLSPH PhD students were selected as Connaught Fellows this year. These students will lead projects to enhance the care of those who have disabilities or diseases. 🔗 Read about their projects: https://ow.ly/xqWK50XNcfm. @ihpmeuoft.bsky.social #DLSPH #Innovation

Have you checked out our online knowledge synthesis course? Bring a project to work on and walk away with a protocol that's been reviewed by experts! Starts in January 2026, learn more here! bit.ly/42AoohE @andreatricco.bsky.social @cathsmstratton.bsky.social @sporalliance.bsky.social

DEADLINE EXTENDED TO NOVEMBER 27, 2025 - There’s still time to register for the Digital Health Literacy for Older Adults (DHLOA) in-person knowledge mobilization event! Sign up as a Person with Lived Experience: tinyurl.com/bp5bn6wr Sign up as a General Attendee: tinyurl.com/48x8x5e2 /1

Excited to share this work which extends the Template for Intervention Description and Replication (TIDieR) to include pediatric-specific considerations: lnkd.in/gzFq_P52 Wonderful leadership by @martinoffringa.bsky.social! #ClinicalTrials #ReportingGuideline #Pediatrics #ChildHealth

Do you want to learn more about #KnowledgeSynthesis from the experts? By the end of our online course, "Intro to KS for Knowledge Users", you'll have a protocol ready for registration. Apply & find out more here: bit.ly/42AoohE @cathsmstratton.bsky.social @andreatricco.bsky.social

Check out our July 2025 e-newsletter for the latest SPOR Evidence Alliance updates, including patient-led research spotlights, publications, and engagement opportunities! 📩 Read it here: mailchi.mp/smh/spor-evi... #PatientOrientedResearch #PatientEngagement #KnowledgeMobilization

We're thrilled to share that KTP grad student @cathsmstratton.bsky.social & scientists Drs @andreatricco.bsky.social and Jennifer Watt were awarded funding for their projects thru the Canadian Institutes of Health Research Spring Project grant competition! Congratulations to all of the grantees! 🎉

Check out our May 2025 e-newsletter for the latest SPOR Evidence Alliance updates, including patient-led research spotlights, publications, and engagement opportunities! 📩 Read it here: mailchi.mp/smh/spor-evi... #PatientOrientedResearch #PatientEngagement #KnowledgeMobilization

(2/2) PhDs for Public Impact fellows focus on engaging the public through their scholarly work. See the full group of 2025-2026 fellows at the link below. Congratulations again to Catherine, and all of the new cohort! www.cgpd.utoronto.ca/public-schol... @sporalliance.bsky.social

(1/2) Congratulations to KT Program grad student @cathsmstratton.bsky.social on being awarded a Connaught PhDs for Public Impact Fellowship from the Centre for Graduate Professional Development at the School of Graduate Studies, @uoft.bsky.social! @andreatricco.bsky.social

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.

I am presenting at an Open Science event on March 21st & would like to get the patient community involved & influencing how I present the patient perspective. If you have 5 minutes, please consider completing this survey to share your feedback: docs.google.com/forms/d/e/1F... Many thanks!

Resharing on Bluesky now that it’s officially out! Our protocol for a scoping review examining barriers & facilitators involved in #RareDisease registry development. journals.lww.com/jbisrir/abst... @andreatricco.bsky.social @maureenchats.bsky.social @sporalliance.bsky.social @ktprogram.bsky.social

It’s #RareDiseaseDay! With ~1 in 12 affected, RDs represent a significant burden for patients, families, & systems. The RD diagnostic odyssey is a call for improved awareness. The fact that still, only 5% of RDs have a therapy is a sobering reminder of the work we have to do. #RareDiseaseIsNotRare

The @moyamoyafoundation.bsky.social is gathering input from #moyamoya patients on what they’d like to hear about at upcoming educational events. Please follow this link: docs.google.com/forms/d/1wxF.... Responses are de-identified and are not part of a research project.

Most #RareDisease #registries require a confirmed Dx for inclusion. This is important for accurate calc of risks & outcomes, but accuracy is also threatened when people who remain undiagnosed are missed. This can perpetuate inequities: “If someone’s not counted, they don’t count.”

The #RareDisease #DiagnosticOdyssey is a glaring example of health inequity. A Canadian Organization of Rare Disorders survey found pts saw 5.9 clinicians & received 3.2 misdiagnoses over 3.7 years before receiving an accurate Dx. RD awareness is crucial. #RareDiseaseIsNotRare #RareDiseaseTruth

It’s #RareDiseaseMonth! While there is no official definition, #RareDisease (RD) generally refers to conditions affecting <1 in 2k people. There are an estimated 10k RDs. Despite each RD being uncommon, 1 in 12 Canadians is affected by RD. #RareDiseaseIsNotRare #RareDiseaseTruth

A big step forward! While the roll out of the National Strategy for Drugs for #RareDiseases has been slow with a series of agreements with provinces, this investment mitigates existing disparities. We must continue advocating for the inclusion of other drugs & sustainable support

Member spotlight! Amanda Doherty-Kirby is a valued patient partner of the SPOR Evidence Alliance, and has contributed to many knowledge synthesis projects. Check out her spotlight in our December 2024 newsletter: shorturl.at/LG45U We are grateful for her partnership!

Sharing a new protocol publication regarding #MetaAnalysis in the context of #LivingSystematicReviews, led by my fellow lab member: journals.lww.com/jbisrir/fullte…. Well done, Menelaos! @andreatricco.bsky.social

#HappyNewYear, everyone! May each day bring comfort, fresh opportunities, and moments of happiness. Here’s to embracing new challenges and celebrating every win as we step into 2025. #NYE #NYE2025 #HappyNewYear2025

Wishing everyone a wonderful holiday season that is restorative and fulfilling #MerryChristmas #HappyHolidays

If you are interested in #moyamoya and #LargeLanguageModels, please consider completing this study survey from Boston Children’s Hospital. Eligible for patients, caregivers, advocates, clinicians, and researchers! #RareDisease #Neurosurgery #Neurology Link: redcap.tch.harvard.edu/redcap_edc/s...

@moyamoyafoundation.bsky.social is now on Bluesky!! Follow for educational information and updates on foundation events and initiatives! #Moyamoya #RareDisease #Neurology #Neurosurgery

The Wicked Movie might be my Eras Tour 🩷💚🩷💚🩷💚🩷 #TheatreKid

Hello Bluesky crowd! I’m new here and would love to connect with people interested in #Epidemiology #RareDisease #PatientAdvocacy#PatientEngagement #GradSchool #Disability #ChronicIllness #HealthResearch. I’m an Epidemiology PhD student and patient advocate in Toronto. Looking forward to connecting!

Got the #DisabledInSTEM Starter Pack up and running! Can't wait to see the list grow and meet new connections! 💜 go.bsky.app/SwJ4rFX

Public health is so successful that most only pay any attention when it fails: a viral outbreak or a dip in cancer screening rates. This selective attention denies the value of public health. “Forgetting” is a product of its success, but allows misinformation to brew. We must remember and remind.

Wanting to share my first ever publication about the #DisabledInSTEM Mentorship Program! Hoping this inspires some more people to join the 2025 program! www.nature.com/articles/s41...

An intro to me 👋. I post on #PatientEngagement (aka #PPI or #ConsumerInvolvement) in #Research or other science-y and research-y stuff. Among other things, I'm a chemist and live with #RheumatoidArthritis. I work with people/orgs in research to help bring patient/public perspectives to their work./1

Hello Bluesky crowd! I’m new here and would love to connect with people interested in #Epidemiology #RareDisease #PatientAdvocacy#PatientEngagement #GradSchool #Disability #ChronicIllness #HealthResearch. I’m an Epidemiology PhD student and patient advocate in Toronto. Looking forward to connecting!