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 those with TSC.

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.