Bardet-Biedl Syndrome

Bardet-Biedl syndrome is a rare, inherited disorder that causes a number of abnormalities in the way certain parts of the body function – including a person’s vision.

• Vision loss caused by retinal dystrophy. Central vision loss is often experienced first, with more severe vision loss often experienced by the teenage years or early adulthood.
• Obesity, usually more pronounced in the area of the torso (truncal obesity).
• Extra fingers and/or toes (polydactyly), or minor abnormalities of the hands and feet such as slight webbing or extra skin between the fingers and toes.
• Lack or decreased secondary sex characteristics (hypogonadism).
• Developmental delay.
• Kidney problems.

There is no treatment for the severe vision impairment associated with Bardet-Biedl syndrome. As vision worsens, individuals may benefit from low vision aids and, eventually, mobility training.

The Foundation Fighting Blindness funds leading research into the vision loss associated with Bardet-Biedl syndrome, and encourages people living with this disease to enrol in the FFB Patient Registry, which will keep you updated on emerging clinical trials and opportunities to participate.

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Please know that while information on this page has been supplied by vision care experts, it is meant to complement and not replace any advice or information from your eye health professional. Please talk to your doctor about what you learn here, and how it applies to your own vision health.