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On April 5, the European Tuberous Sclerosis Complex Association in collaboration with the Polish Tuberous Sclerosis Association and EPISTOP has the pleasure to invite you to the DEA Pit Stop in Warsaw, Poland. The focus will be on genetics, neurology and nephrology in Tuberous Sclerosis Complex. 

Leading researchers on this years topics include prof. Sergiusz Jozwiak and Katarzyna Kotulska (hosting clinicians), prof. Anna Jansen, dr. Floor Jansen, dr. J. Chris Kingswood and dr. David Kwiatkowski (visiting clinicians). 

Registration to the DEA Pit Stop is free of charge. To confirm your participation, simply email to This email address is being protected from spambots. You need JavaScript enabled to view it. before March 11, 2019. 

The full programme can be found here

 

kerstwensen EPISTOP

Enjoy the lights on the trees, the icicles formed on the eaves, the red hue of holly,

A the love and warmth you feel surrounded by family and friends.

EPISTOP wishes you a Merry Christmas and all the best for the New Year!

 

 

 

Prof. Jozwiak, the coordinator of our project, had the pleasure to represent EPISTOP at the American Epilepsy Society 2018 (AES 2018) in New Orleans, that took place Nov 30 - Dec 4. He participated in the Special Interest Group "Preventing Epilepy: Myth or Reality?" on Monday December 4.

Sergiusz AES2018 1

 

Sergiusz AES2018 2

Infantile Spasms (IS) occur in up to 35% of children with Tuberous Sclerosis. They are a medical emergency. IS are seizures, usually occurring in children under age one, which are often overlooked or misdiagnosed as colic, reflux, or a startle relfex. They can cause catastrophic, permanent damage to a child's developing brain. 

Know the signs to 'STOP' Infantile Spasms. 

 

 

We are pleased to announce that by the end of October 2018, all patients who participated in the EPISTOP project have completed the study. Currently we are analyzing the data and preparing publications. We will keep you informed on the progress.