Bardet-Biedl syndrome (BBS)

In this condition RP is accompanied by abnormalities of the fingers and/or toes, obesity, kidney disease and sometimes developmental delay and learning difficulties.

Retinal degeneration can be one feature of a genetic condition that also affects other body systems. Certain genetic faults that cause damage to the eye can also impact other organs and tissues. Where more than one body system is involved, the condition is called a syndrome. However, the sight loss aspect can be very similar to that experienced by people living with non-syndromic retinitis pigmentosa.

Bardet-Biedl syndrome (BBS) is a recessively inherited condition.

More detailed information on Bardet-Biedl syndrome is available from

Meet our community: Rachel Foley

That was when she was found to have Bardet-Biedl Syndrome (in which sight loss is one element). Her genetic diagnosis of BBS1 put a lot of things “into perspective” for her.

Meet Rachel

Join our lived experience panel

If you would like to get involved in representing the inherited sight loss community through activities like focus groups, surveys and research projects, join our Experience Panel.

Represent our community