Bardet Biedl Syndrome is a rare genetic condition which affects approx 700 people in the UK. BBS UK are the only registered UK charity providing support to BBS families and carers. 

The charity survives on an extremely small budget and is managed by volunteers. Their aim is to offer support to BBS families and to raise awareness of this extremely rare condition. 

Research therapy is ongoing at Great Ormond Street hospital with human trials hopefully commencing in 2-3 years which may prevent sight loss syndrome. 

My colleague Liam Wilkie’s daughter Caitlin is one of those affected by the condition and the aim is to raise further funds for the charity in order for support and research to continue.