Belgian coast; Credit: ALSR

The Differdange-based Association Luxembourgeoise du Syndrome de Rett (ALSR) has announced that it is organising an upcoming trip to Middelkerke in Belgium, bringing together several families affected by Rett syndrome, a rare genetic neurological disorder that primarily affects girls.

The trip will take place from Friday 5 to Monday 8 June 2026. It will bring together six families of girls (including siblings) living with Rett syndrome for a short seaside stay on the Belgian coast - representing a total of 27 participants. It will also allow the six girls living in Luxembourg to meet another girl affected by the condition and her family, who live in Belgium.

The main objective is to create an opportunity for families to connect and share experiences, as many of them go years without meeting another family facing the same diagnosis, according to ALSR. 

The initiative is organised and coordinated by ALSR, whose objective is to offer families a rare opportunity to step away from their daily constraints and share meaningful moments together in a supportive environment.

The project is fully self-funded by ALSR, ensuring that participating families can attend free of charge, without any financial burden. It is also designed as a recurring initiative, with the intention of organising similar trips every year. ALSR said it hopes to secure funding for future editions.

"This trip is not a luxury - it's a necessity. Families living with Rett syndrome rarely get a real break, and this is exactly what we are trying to offer: a moment of normal life," Jean-Francis Covi, President of ALSR, told Chronicle.lu. "At ALSR, our mission is simple: create concrete, meaningful experiences for these girls and their families. This trip is one of those moments that truly matter."

One parent shared: "For us, this trip means everything. We don't often get the chance to travel as a family because of the complexity of our daughter's condition".

"It's not just a holiday - it's a moment where we can breathe, feel understood and not be alone," they added.