European Tuberous Sclerosis Complex Association

09/09/2026

Between 75-90% of people with TSC experience epilepsy during their lifetime. Seizure control is a main concern in TSC. However, not all seizures in TSC are complex. They can vary-from those that may disappear with age up to the so called DEEs (Developmental and Epileptic Encephalopathies)-which are in fact SEVERE and DRUG RESISTANT.
Some seizures can start at birth or even in utero. Some seizures carry many significant implications and comorbidities - some don’t.
WE DON’T KNOW WHY THIS IS! IT IS SOMETHING WE SHOULD BE CONCENTRATING ON.
diseases
&complexepilepsies

Every story deserves to be recognized. Every family deserves to be understood. At this year’s European Epilepsy Congress, we’re proud to announce a new partnership with the patient advocacy community, helping shine a light on rare and complex epilepsies, with a particular focus on Developmental ...

27/08/2026

We’re so excited to share this beautiful and moving film with you on Prime video❤️🎬:
Based on the novel by Anna Todd, it follows Ry, a college student living with tuberous sclerosis, on a summer trip to Mallorca with her mother. There she falls for a local named Julián and learns to live fully in the present — until her declining health and a family secret threaten to change everything before summer ends.

15/05/2026

Today is .
But we have nothing to celebrate.

Like all rare diseases, a diagnosis turns life upside down. Overnight, families and healthcare professionals face an avalanche of biopsychosocial challenges—struggling to find solutions where too few exist.

There is still no cure in sight!
And our main objective remains far away.

Yet there is a reason to act: research into TSC doesn't just promise hope for this community. It may also unlock answers for many other rare diseases and serious illnesses.

We need to fund more research. Let's share our stories. Awareness is only the first step towards our main goal!

14/05/2026

MAY-The month dedicated to spreading awareness on TUBEROUS SCLEROSIS COMPLEX

HOT OFF THE PRESS
NEW PUBLICATION

https://tandconsortium.org/tandem-2-project-protocol-paper-now-available/

What better way to start the day!

(TSCassociatedneuropsychiatricdisorders)

We are delighted to share with you the publication of the TANDem-2 project protocol that was recently published in the Journal of Medical Internet Research (JMIR) Research Protocols.

13/05/2026

TSC is a rare genetic condition that can affect many organs, including the brain, eyes, heart, lungs, kidneys, skin, and teeth. Raising awareness helps improve understanding, support, and care for everyone living with TSC.

11/05/2026

Tuberous Sclerosis Complex affects lives in many ways, but no one should face it alone. Today, we stand with our community and reaffirm our commitment to awareness, support, and hope.

06/05/2026

The 2026 TAND Mini-Symposium will be held online on 7 May 2026 from 14:00–16:00 Central European Time (CET).

This event will bring together members of the TAND community to share updates, ideas, and ongoing work related to TAND research and care.
You can join in and listen by registering using the link below:

https://uct-za.zoom.us/meeting/register/qHRwCEg_SQKx4SHYafAS5Q

25/04/2026

Prof. Sam Amin, Lead Consultant Paediatric Neurologist University Hospitals Bristol and Weston NHS Foundation Trust and Chair of Research British Paediatric Neurology Association is conducting a short survey to understand outcome measures in DEEs, including TSC, and specifically what matters most to patients.

Please give 5 minutes of your time to complete this important survey currently available in Spanish, English, French, Italian and Portuguese.

https://redcapsurveys.uhbw.nhs.uk/surveys/?s=MCCY4YCCLE34MML9

02/04/2026

April 2 is World Autism Awareness & Acceptance Day
Wear something blue - we will too!

26/03/2026

Today, March 26 is Purple Day!
Epilepsy is the most common neurological manifestation in individuals with TSC. It is estimated that possibly more than 90% of people with TSC will experience epileptic seizures at some point in their life. Often these complex epilepsies are also treatment resistant.

Today is PURPLE DAY. The perfect day to circulate this important survey.
Please give 5 minutes of your time to complete the survey.

Prof. Sam Amin, Lead Consultant Paediatric Neurologist University Hospitals Bristol and Weston NHS Foundation Trust and Chair of Research British Paediatric Neurology Association is conducting a short survey to understand outcome measures in DDEs, including TSC, and specifically what matters most to patients. At the moment, it is available in Spanish, English, and French.

https://redcapsurveys.uhbw.nhs.uk/surveys/?s=MCCY4YCCLE34MML9