TSC In the News

TS Canada ST Survey


Posted

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


Posted

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


Posted
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
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Events Calendar

15mayAll DayTSC Global Awareness Day

01junAll DayWorldwide LAM Awareness Day

28febAll DayRare Disease Day

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