Bardet-Biedl Syndrome UK (BBS UK)

Who we are

Bardet-Biedl Syndrome UK (BBS UK) is a charity aimed at protecting the health and promoting the welfare of persons affected by Bardet-Biedl Syndrome (BBS), their families and carers. 

BBS features rod-cone dystrophy, obesity, renal abnormalities, developmental delay, learning difficulties and extra digits among other possible symptoms.  BBS UK has a third-sector contract with NHS England to provide support to patients attending specialist multi-disciplinary clinics in Birmingham and London. 

We are a small but passionate team of volunteers and staff, committed to improving the lives and wellbeing of those living with Bardet-Biedl Syndrome.  We produce leaflets, newsletters, an annual weekend conference and other activites/events.