BBS Research

Research is an integral part of the history and future of Bardet-Biedl Syndrome UK and enables us to improve the lives of those with the syndrome through better management and treatments and in understanding the underlying causes of the syndrome.

As a charity, we have been primarily patient support focused and are only just starting to consider our role with regards to research and collaboration with the scientific and medical professionals across the globe. Our aim is to engage with rare disease research, to share experience and knowledge of our genetic condition with others and network with similar organisations. Most importantly, we wish to share and publish updates regarding research to our members and patients.

BBS UK has developed its research policies to support us in future collaborations and have a comprehensive Research Policy and Guidelines, Scientific Advisory Board Policy and Research Statement and Pharma Policy which can viewed or downloaded at the link below.