The meeting took place on 20-21 October at the Telethon Institute of Genetics and Medicine (Tigem) in Pozzuoli, Italy.

On the morning of Friday 20 October, scientists from the research groups met to share progress on their various sub-projects, while representatives from patient organisations visited the Institute's laboratories.

The afternoon was devoted to presentations of current sub-projects, using language and explanations tailored to the needs of patient representatives. Afterwards, the different ways of collaboration between researchers and patient organisations were discussed. The day ended with a convivial dinner - pizza, of course!
 

On the morning of Saturday 21, a general meeting was held to organise the next phase of the consortium and set the date for the next meeting, which will take place in Warsaw, Poland, in April 2024.