TSC In the News

Webinar – Thursday December 14th @ 8:00pm ET

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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

Presenting the TÉCUM Program

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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 registration.

It is mandatory to register via the form. You can scan the QR code (in the attached poster) or click here to access the registration form.

Speakers will present in French, but English subtitles will be available live.

TÉCUM Symposium Invitation – English

TÉCUM Symposium Invitation – French

Educational Series on TSC

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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

Attention: Résidents du Québec

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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.

Evaluation_Questionnaire_Patients_repondre

Ontario TSC Network – Meeting

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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.

Ontario TSC Network Meeting Flyer

Changes to the TSC Canada website

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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

TÉCUM

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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!

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