Introduction

 

We are parents of a child affected by Tuberous Sclerosis and have wished to gather practical information and make it accessible to all. Families are often lost facing this rare disease, whose symptoms and prognosis remain very different from one patient to another. 

We hope that this website can bring you a real support by sharing updated information, contacts or tips and will facilitate your everyday life and make you save time.

The information in this website and forum is free and open to all to grow communication related to Tuberous Sclerosis (such as disease knowledge and management, experience sharing between families or patients…).

First of all, do not remain alone facing TSC and do not hesitate to post your comments on the forum. Your input will be useful to all, whether you are directly or indirectly concerned by TSC. Patient (child, teenager, adult) or close relative (parent, grandparent, sister or brother, cousin), you can express yourselves and share your testimony. All areas in everyday life can be addressed here: work, school, leisure, social life, care, treatment … 

All initiatives, even small, put end to end, can improve the understanding of Tuberous Sclerosis and make us to control it better.

By definition, this website can be improved and can benefit from your comments. Do not hesitate to contact us through the forum or by email at the following address:

contact@sclerose-tubereuse.com