Welcome to the website of the TAND consortium.

The TAND consortium is a group of stakeholders in the Tuberous Sclerosis Complex (TSC) community brought together by Prof. Anna Jansen and Prof. Petrus de Vries to address important gaps in Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND) research.

TSC is a genetic disorder with many different manifestations and up to 2 million people around the world have the condition. People with TSC have many physical manifestations that are usually well recognised and treated. However, most people with TSC also have difficulties associated with their development, mental health and learning abilities. We call these difficulties “TSC-Associated Neuropsychiatric Disorders”, or “TAND”. Most people around the world have TAND manifestations, but very few ever receive support for these challenges.

The TAND consortium includes 35 members from 16 countries, representing most World Health Organization (WHO) regions. Members include a broad range of stakeholder groups including family representatives, non-profit family support organisations, researchers, technology experts, clinicians, social scientists, and statisticians. The consortium also brings together a diverse range of expertise including lived expertise, child and  adolescent psychiatry, paediatric neurology, clinical psychology, educational psychology, speech and language therapy, special education, intellectual disability medicine, nephrology, biomedical engineering, biostatistics, veterinary sciences, behavioural sciences, neurosciences and digital technology expertise.

This collaboration between individuals with lived expertise and professional expertise leads to cross-fertilisation and new synergies between established and young TSC clinicians and researchers, professionals from outside the TSC community, and family representatives from different parts of the world. The global map below shows all members of the consortium and their geographical locations.