Genetic disorder digital project gets charity backing

The project will use a smartphone app to help those with the rare genetic disorder, Tuberous Sclerosis Complex

Joe Lepper | 5th Apr 19

Two charitable organisations have come together to fund a global digital project to support people with Tuberous Sclerosis Complex (TSC), a rare genetic disorder that causes tumours to develop.

The UK based Tuberous Sclerosis Association and Belgian based King Baudoin Foundation have awarded funding to the TANDem Project, which will help treat TSC associated neuropsychiatric disorders (TAND), including ADHD, aggression, anxiety and sleep disorders.

While the tumours are non-cancerous nine out of ten people with TSC experience such associated disorders, which also include autism.

The project aims to develop a smartphone app to help those with TSC self report and measure how people are affected by such associated disorders. It will also investigate the best ways to treat such issues.

Milestone project

“Individuals and families affected by TSC have been calling for a greater clinical focus on TAND and we are therefore delighted to be co-funding this milestone project of international importance,” said Tuberous Sclerosis Association Chief Executive Louise Fish.

“The development of an app is a practical project which will have a tangible impact on the day-to-day lives of individuals and families affected by TSC.

“Co-funding the TANDem Project, alongside the King Baudouin Foundation, demonstrates the TSA’s focus on driving research that improves the lives of people living with TSC.”

In the UK there are between 15,000 and 44,000 individuals and families affected by TSC. Each month around 10 babies in the UK are born with the genetic disorder.