Overview

Bardet-Biedl syndrome

Bardet-Biedl syndrome (BBS) is a rare, genetically inherited disorder. It affects a small number of people.

BBS is characterised by:

a loss of sight (rod cone dystrophy)
obesity
extra fingers and/or toes (polydactyly)
learning difficulties
kidney (renal) abnormalities

We work with the University Hospital Birmingham and the charity BBS UK to provide a national service for adults who have been diagnosed with BBS. This allows our patients to benefit from joined-up specialist care.

We aim to:

provide high quality care to people with BBS in th UK
achieve the best health outcomes for people with BBS
support people who want to attend our clinic, together with their local consultants and care teams

We work closely with:

local medical and nursing teams
specialist genetic scientists
the patient support group BBS UK

Our dedicated nurse practitioners provide care and support:

coordinating BBS related care needs
attending patient specific meetings
following up with patients with regular phone calls and emails
developing bespoke condition specific care plans and clinical passports
teaching local professionals

Our team is made up of:

consultants
a phycologist
a dietitian
nurses
administrative staff

The BBS service also runs a transition clinic for young people who are moving from children's BBS services at Great Ormond Street, to adult services at Guy's and St Thomas'.