Get Support for BBS

We may be science-led, but we’re people-focused

Committed to ciliopathies

After decades of helping people with ciliopathies to manage medical conditions without dedicated treatments, Prof. Philip Beales and Dr. Victor Hernandez co-founded Axovia to develop one-time treatments to address the disease burden for this rare group of disorders.

Studies are currently underway to assess our novel gene therapy’s potential to halt retinal degeneration and numerous neurometabolic medical conditions by modifying the underlying cause of BBS.

Community & resources


A UK-registered charity providing support, information and advocacy services to those living with BBS, their families and carers.


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Bardet Biedl Syndrome Foundation

A US non-profit organisation that connects families and shares information on research, treatment and therapies for BBS.

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Marshfield Clinic Health System

An integrated health system in Wisconsin, US with a BBS multidisciplinary clinic for people with BBS that accepts self-referrals. The Clinical Registry Investigating Bardet-Biedl Syndrome (CRIBBS) includes participants from 40 countries.

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