Please join the TSC Alliance and Tuberous Sclerosis Canada Sclérose Tubéreuse (TSC Canada ST) on Thursday, December 14 at 8 pm ET to learn about the TSC Alliance’s ongoing research collaboration with Drs. Mark Keezer and Phillipe Major. They will be talking about ongoing efforts for the TSC Natural History Database and Biorepository and answer any questions regarding research for TSC in Canada. Please register for the webinar using the link below. Webinar Registration Link
BRI Symposium – Thursday November 16, 2023. The symposium is from 8:30 AM – 5:00 PM. Registration is free and attendees are welcome to attend virtually. The Keynote speaker is Dr. Petrus DeVries who will talk about both autism and TSC. https://hollandbloorview.ca/research-education/bloorview-research-institute/awards-events/bri-symposium
Are you an adolescent or young adult with epilepsy or a family member or caregiver of such a person? The TÉCUM program (Transition en épilepsie complexe de l’Université de Montréal) is hosting a symposium that is meant for you! On Thursday, December 7, 2023, from 5:30 to 6:30 p.m., Dr. Mark Keezer (CHUM) and Dr. Philippe Major (CHUSJ) will present the transition program. There are two options to attend the evening conference: 1. Come to the CHUM at 1000 rue Saint-Denis, room A.02.9209A/B. Snacks will be served on site. 2. Attend the online presentation. The link will be provided upon…
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An educational series to empower patients and their families with knowledge and resources related to TSC, are being planned by Canadian health care professionals. They want your input on frequency, timing, and topics of the educational series. Please take 1 minute to complete the survey: https://www.surveymonkey.com/r/CTXM9WQ
l’Institut National d’Excellence en Santé et Services Sociaux (INESSS) et en cours d’évaluation pour le remboursement par l’assurance-médicaments d’un médicament pour le traitement en appoint de la sclérose tubéreuse de Bourneville. l’INESSS à un questionnaire (ci-joint) pour que les patients et des proches aidants puissent participer à l’évaluation. Le questionnaire est ouvert à tous les patients et proches aidants de personnes atteintes de la sclérose tubéreuse de Bourneville, qu’ils aient essayé ou non ce médicament. Les personnes doivent envoyer le questionnaire ci-joint rempli à email@example.com. Si vous avez des questions ou besoin d’aide, vous pouvez contacter par courriel : firstname.lastname@example.org ou…
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The Ontario TSC Network is holding a meeting on Friday October 27th, 2023 at the Chestnut Conference Center in Toronto. Families are invited to attend the meeting to connect with the TSC community in order to collaborate, exchange knowledge and advance efforts to enhance care for patients with TSC in Ontario and beyond. The focus of the meeting is on TSC-Associated Neuropsychiatric Disorders (TAND). Spaces are limited. Limited funds are available to cover hotel accommodations for out-of-town attendees. For more information and to register, visit the registration website. https://web.cvent.com/event/bcac8261-d71b-414c-b595-c0806421aa15/summary TSC Canada and Jazz Pharmaceuticals are proud supporters of this meeting….
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Changes are coming to the TSC Canada website! While we work on creating a new TSC Canada webpage with Canadian focused content, we are making use of our Global Alliance Partnership with the TSC Alliance to ensure our medical content is current. You’ll see throughout the TSC Canada website, links to the relevant TSC Alliance webpages. We look forward to presenting our new webpage in 2024! We are currently looking for volunteers to translate our new webpage content from English to French. If you are interested in volunteering, please email TS Canada ST@gmail.com
At TSC Canada, we often hear of the significant struggles that patients with complex epilepsy have during the transition period to adult care. CHU Sainte-Justine and CHUM are developing a program called “Transition en épilepsie complexe de l’Université de Montréal (TÉCUM)”. The TÉCUM program aims to ensure there is a smooth transition during this period. To learn more about the TÉCUM program: UdeM Announcement Maladies chroniques : de la pédiatrie vers les soins pour adultes To learn about the TSC Clinic team at CHU Sainte-Justine and CHUM, the TSC Alliance “Up Close” story is worth the read!
If you didn’t get the chance to attend the 2022 World TSC Conference, you can view the educational sessions online! Visit the TSC Alliance 2022 World TSC Conference Video page. *Recordings made possible by a Visionary Technology Sponsorship from Drs. Bonnie and Jonathan Rothberg and family.
Two new papers have been published in Pediatric Neurology. Updated International Tuberous Sclerosis Complex Diagnostic Criteria and Surveillance and Management Recommendations provide updated ‘gold standards’ for the diagnosis, surveillance and management of TSC. The update to the guidelines take into account advances in both TSC research and treatments. Beyond The Guidelines: How We Can Improve Healthcare For People With Tuberous Sclerosis Complex Around The World is a white paper that identifies three priorities and provides associated recommendations for improving TSC care around the world. These two very important papers are a step forward in improving the lives of…
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