Associazione Sindrome di Bardet-Biedl Italia

Associazione Sindrome Bardet-Biedl Italia APS (ASBBI) is an Italian nonprofit association supporting people affected by Bardet-Biedl syndrome and their families. It serves as a first point of contact for people facing the condition, providing opportunities to connect, share experiences and find information. The association also works to build a national network that raises awareness of the syndrome and shares developments in research.

As a small organisation focused on a rare and little-known condition, ASBBI aims to ease the challenges experienced by patients and relatives. Its work promotes inclusion, patient rights and solidarity, while encouraging greater understanding and confidence within the wider community. The association’s website presents several areas of activity, including psychological listening support, school-related initiatives, research, autonomy projects and events. It also shares personal testimonies and information about the syndrome, while making clear that its online material is for information and discussion, not a substitute for medical advice or the relationship between patients and their doctors.