TSC In the News

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 info@rqmo.org.

Vous trouverez plus d’information sur comment faire un commentaire à l’INESSS ici: https://www.inesss.qc.ca/thematiques/medicaments/medicaments-evaluation-aux-fins-dinscription/faire-un-commentaire-sur-un-medicament.html.


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.

Ontario TSC Network Meeting Flyer

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



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.

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.