Moyamoya Foundation
@moyamoyafdnA 501(c)(3) organization for people with moyamoya, a rare, progressive cerebrovascular disease. We support research & assist patients with uninsured costs.
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Moyamoya Patients are at increased risk for stroke, know the signs and act F.A.S.T. #StrokeAwareness #MoyamoyaFoundation #MoyamoyaAdvocacy #MoyamoyaResearch #RareDisease
Congratulations, Dr. Andrea Tricco, who's been named the new Executive Director of St. Michael’s Hospital’s Li Ka Shing Knowledge Institute! Get to know Tricco, her research expertise in the area of knowledge synthesis and her goals for her new role: unityhealth.to/2024/11/andrea…
Today October 29th, is World Stroke Awareness Day. Up to 80% of strokes may be prevented... so think F.A.S.T.
Please RT: Reminder that we're currently accepting applications to our online course, Intro to Knowledge Synthesis for Knowledge Users! Spots are limited. Don't miss your chance to get 1:1 feedback on your project! Apply here: bit.ly/3MBQJfn @ATricco @cathsmstratton
Do you have questions about conducting your knowledge synthesis? Learn from the experts! Join our Knowledge Synthesis for Knowledge Users online course. Learn more here: bit.ly/KSforKUs
Rare disease patient registries are an important tool to advancing research. Catherine Stratton, a rare disease advocate and PhD student, is conducting research to better understand the process of developing these registries and what challenges exist.
Publication alert! ‼️Happy to share the protocol for our forthcoming scoping review. We are identifying #barriers and #facilitators to #RareDisease #registry development. journals.lww.com/jbisrir/fullte… @ATricco @kt_program @SPORAlliance @JBIEBHC @Maureenchats @LauraCRosella
Catherine Stratton (@cathsmstratton) is advancing research focused on optimizing rare disease patient registries that are patient-led or co-created with patient partners. We greatly appreciate her contributions to advancing patient engagement through her work.
Recruitment for my interview-based study continues! If you have any experience creating a #RareDisease patient registry, or are in the planning stages for one, you might be eligible to participate. To learn more, please reach out! #PatientEngagement #Epidemiology
Il sera aussi possible pour les personnes francophones de participer au projet! #MaladieRare #PassiRare
Are you a #PatientPartner, clinician or researcher & been involved in forming a #RareDisease patient registry in Canada? As part of my PhD, I’m conducting semi-structured interviews to learn about these experiences. Please email catherine.stratton@mail.utoronto.ca to learn more!
📣 Calling all #PatientPartners, clinicians, and researchers! Have you been involved in creating a #RareDisease patient registry in Canada? Your insights would be highly valued. Reach out to Catherine at catherine.stratton@mail.utoronto.ca to learn more! ✉️
Are you a #PatientPartner, clinician or researcher & been involved in forming a #RareDisease patient registry in Canada? As part of my PhD, I’m conducting semi-structured interviews to learn about these experiences. Please email catherine.stratton@mail.utoronto.ca to learn more!
Are you a #PatientPartner, clinician or researcher & been involved in forming a #RareDisease patient registry in Canada? As part of my PhD, I’m conducting semi-structured interviews to learn about these experiences. Please email catherine.stratton@mail.utoronto.ca to learn more!
#OnlineFirst: Indications for cerebral revascularization for moyamoya syndrome in pediatric sickle cell disease determined by Delphi methodology. thejns.org/pediatrics/vie…
A really valuable paper. In the short time since this was published, I already found it incredibly helpful in counseling patients / families. #moyamoya #sicklecell @moyamoyafdn @ConquerSCD @SCCConsortium @ASH_hematology @ASPHO_hq @ctchildrens @UConnNeurosurg @LisaSunMD
#OnlineFirst: Indications for cerebral revascularization for moyamoya syndrome in pediatric sickle cell disease determined by Delphi methodology. thejns.org/pediatrics/vie…
On May 10th we presented a virtual seminar, now we want to hear your feedback. Here is a link to the replay on our YouTube channel: youtu.be/K7NkccYmwO0?si… Please share your thoughts and ideas for future events? #MoyamoyaFoundation #MoyamoyaAdvocacy #MoyamoyaResearch #RareDisease
The May 10, 2024 - FACEBOOK LIVE SEMINAR recording is now available on our YouTube site with a time-line. youtu.be/K7NkccYmwO0 THANK YOU to all of our expert presenters for sharing your expertise! @GreatOrmondSt @SickKidsGlobal @BostonChildrens @DartmouthHealth @BethisraelD
May 10, 2024 The Moyamoya Foundation will present A Virtual Seminar (Live Stream via Facebook) with these nine moyamoya experts presenting the latest data as well as advancements in research. Join us to learn more about this rare disease! #Moyamoya …0May2024VirtualSeminar.eventbrite.com
REMINDER - Monday May 6th, the Moyamoya Foundation and Hartford Healthcare will be at Connecticut Legislative Office Building to raise awareness for Moyamoya Disease!
Visit the Moyamoya Foundation along with our friends from Hartford Hospital - Ayer Neuroscience Institute at the CT Legislative Office Building on May 6th for Moyamoya Awareness Day. #WorldMoyamoyaDay #MoyamoyaFoundation #MoyamoyaAdvocacy #MoyamoyaAwareness #RareDisease
Save the date May 10, 2024 for A Virtual Seminar (Live Stream on Facebook) with these nine moyamoya experts presenting the latest data as well as advancements in research. 0May2024VirtualSeminar.eventbrite.com #MoyamoyaFoundation #MoyamoyaAdvocacy #MoyamoyaResearch #RareDisease #VirtualSeminar
Save the date May 10, 2024 for A Virtual Seminar (Live Stream on Facebook) with these nine moyamoya experts presenting the latest data as well as advancements in research. 0May2024VirtualSeminar.eventbrite.com #MoyamoyaFoundation #MoyamoyaAdvocacy #MoyamoyaResearch #RareDisease #VirtualSeminar
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