Archive for the ‘Uncategorized’ Category

Updates to the guidelines and beyond

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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

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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

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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

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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

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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

Attention: Adults with TSC or parent/caregiver of a dependent adult with TSC

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Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? Agnies van Eeghen, MD, PhD at Erasmus Medical Centre in Rotterdam, the Netherlands and her research team have developed a questionnaire for adults with TSC, called the Checklist for Adults with TSC or CHAT-TSC. In this questionnaire, adults with TSC or caregivers can indicate all of the problems experienced living with TSC. Dr. Eeghen and her team are seeking volunteers to help test this questionnaire. If you want to participate in this research project please click on this link http://www.123formbuilder.com/form-4405144/contactformulier then enter your name and…

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North American Virtual Epilepsy Meeting

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The International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) is hosting their North American Virtual Epilepsy Meeting September 25-27, 2020. Registration info will be coming soon! For more information and to view the program, visit www.epilepsycongress.org/naec/

COVID-19 and TSC

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Do you have questions regarding COVID-19 and TSC?  Here are some excellent resources: COVID-19 Tips for Parents / COVID-19 Conseils aux parents en situation de confinement COVID-19-FAQ COVID-19-Considerations for TSC Medical Professionals COVID-19 Mental health resources for adults and children, including those with intellectual disabilities For more comprehensive and up to date Canadian information, please visit Government of Canada Coronavirus Disease (COVID-19) website

COVID-19 and TSC: Webinars, Forums and Town Hall Meetings

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The COVID-19 pandemic can be an especially challenging time for those affected by TSC.  The Tuberous Sclerosis Alliance (TS Alliance) is offering a number of webinars, open forums and virtual Town Hall meetings that will cover a wide range of TSC related issues during the COVID-19 pandemic. Click here to see a list of all upcoming webinars, forums and Town Hall meeting and here for past sessions.  Visit often as the list is updated regularly. We want to know, what topics would you like to see covered? Email us at TSCanadaST@gmail.com

COVID-19 and TSC

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Do you have questions regarding COVID-19 and TSC?  The following resources prepared by the Tuberous Sclerosis Alliance addresses concerns from the TSC community and healthcare professionals: COVID-19-FAQ COVID-19-Considerations for TSC Medical Professionals For more comprehensive and up to date Canadian information, please visit Government of Canada Coronavirus Disease (COVID-19) website

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