European Tuberous Sclerosis Complex Association

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

10/03/2026

We are delighted to announce that the TANDem-2 project is open for participants to register on the TAND Toolkit App and begin tracking TAND over time!  As the expert in your or your loved one’s TAND, we invite you to participate in the TANDem-2 project. In TANDem-2, we want to understand how TAND change over time and what might influence these changes. We also want to learn more about caregiver wellbeing and how this is related to TAND severity.
To do this we plan to use the TAND-SQ Checklist which is built into the TAND Toolkit App to track TAND severity over time in 500 people with TSC!
You can join the study if you are over 18 and have TSC yourself, or are the parent or legal guardian of someone with TSC of any age.
You can join from anywhere in the world but will need to complete the questionnaires in English.
Visit https://tandconsortium.org/join-tandem-2 to find out more about joining the TANDem-2 research study and access the TAND Toolkit App.

For any questions email: [email protected]

07/03/2026

HOT OFF THE PRESS!



We are delighted to announce that the TANDem-2 project is open for participants to register on the TAND Toolkit App and begin tracking TAND over time!

As the expert in your or your loved one's TAND, we invite you to participate in the TANDem-2 project. In TANDem-2, we want to understand how TAND change over time and what might influence these changes. We also want to learn more about caregiver wellbeing and how this is related to TAND severity.
To do this we plan to use the TAND-SQ Checklist which is built into the TAND Toolkit App to track TAND severity over time in 500 people with TSC!
You can join the study if you are over 18 and have TSC yourself, or are the parent or legal guardian of someone with TSC of any age.
You can join from anywhere in the world but will need to complete the questionnaires in English.
Visit https://tandconsortium.org/join-tandem-2 to find out more about joining the TANDem-2 research study and access the TAND Toolkit App.

For any questions email: [email protected]