TSC In the News

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 those with TSC.

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

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 email address, then click the button “stuur het bericht” (Send the Message).
For more information or questions about the research you can contact the Erasmus Study Team at Chat.tsc@erasmusmc.nl

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 ParentsCOVID-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

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