TSC In the News
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:
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 those with TSC.
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.
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.
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.
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