Tuberous Sclerosis Canada Sclérose Tubéreuse

Attention: Résidents du Québec

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 plan.commentaires.inscription@inesss.qc.ca. Si vous avez des questions ou besoin d’aide, vous pouvez contacter par courriel : marie-eve.fleury@rqmo.org  ou…

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Ontario TSC Network – Meeting

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 to the TSC Canada website

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

TÉCUM

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!

2022 World TSC Conference Videos

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.

Updates to the guidelines and beyond

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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Infantile Spasm Awareness

Do you know about infantile spasms? The Epilepsy Research Program of the Ontario Brain Institute has created an education resource for parents and clinicians on infantile spasms.  Please share the information sheets to help promote awareness and education for new parents and clinicians. Infantile Spasms Awareness fact sheet for new parents. For healthcare providers: Information about Infantile Spasms.

2021 TSC CLINIC PATIENT & FAMILY EXPERIENCE OF CARE SURVEY

The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go for care. Click here for information about the survey. tscalliance.org/clinicsurvey   **Pour les familles/patients qui se rendent à la Clinique STB du CHU Sainte-Justine ou du CHUM, le sondage peut être complétée ici: tscalliance.org/sondage

TS Canada ST Survey

May is TSC Awareness Month, and TS Canada ST is putting together an organizational plan for growing its services and volunteer base. We would like to hear from our TSC community about what resources, programs, and educational information to offer in the future. We are also updating our contact list.   Please fill out this brief 5-minute survey and give us feedback on what would be most helpful to you and your family.   https://survey.sogosurvey.com/r/JH3Zsf

TANDem Project

Great things are coming for those affected by TAND! To know more about the TANDem Project, watch this video: Introduction to the TANDem project by Prof. Petrus de Vries and Prof. Anna Jansen