TSC is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.
TSC In the News
TANDem Project
Posted
Great things are coming for those affected by TAND!
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
North American Virtual Epilepsy Meeting
Posted
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!
Worldwide LAM Awareness Day
Lymphangioleiomyomatosis (LAM) occurs, after puberty, in up to 40% of females with TSC.
It is the primary pulmonary feature of TSC, and occurs rarely in
Event Details
Worldwide LAM Awareness Day
Lymphangioleiomyomatosis (LAM) occurs, after puberty, in up to 40% of females with TSC.
It is the primary pulmonary feature of TSC, and occurs rarely in males.
How to pronounce “Lymphangioleiomyomatosis” (LAM):
limff – AN -geo -LAY – oh -MY – oh -ma – TOE – sis
Meet Noah and Mackenzie they both have TSC and do not intend to let it slow them down, these real life buddies, love the outdoors and spending time together when they get the opportunity. They are both very creative and like to make everyone around them... Continue Reading
Meet Kimberly. Kimberly was diagnosed with TSC at a young age. Growing up, Kimberly was very athletic and participated competitively in speed skating, hockey, basketball and bowling. She is an accomplished musician who enjoys playing her guitar and song writing. Continue Reading
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