Bardet-Biedl Syndrome UK (BBS UK)

Who we are

Bardet-Biedl Syndrome UK (BBS UK) is a dedicated charity committed to improving the lives of individuals affected by Bardet-Biedl Syndrome (BBS), as well as supporting their families and carers. We provide essential guidance, advocacy, and support to help navigate the challenges of living with this rare genetic condition. We also raise awareness and support research into BBS.

BBS can involve a range of complex health needs, including sight loss (rod-cone dystrophy), obesity, renal abnormalities, developmental delay, learning difficulties, and extra digits, among other symptoms. Our work includes a third-sector contract with NHS England, supporting patients at specialist multi-disciplinary clinics in Birmingham and London. We also run an Advice Service, offering practical support beyond the clinics to help patients and their families navigate local services across health, education and social care.

At BBS UK, we are a small but passionate team of staff and volunteers, all driven by a shared commitment to inclusion, empowerment, and making a real impact. We create accessible information resources, host an annual weekend conference, and organise events and activities to bring our community together.

If you’re looking for a meaningful role where you can use your skills and experience to make a significant impact, we’d love to hear from you!

Our culture and values

BBS UK has built a strong, supportive community that values inclusivity, resilience, and empowerment.  We are a user-led charity, governed by a Board of Trustees, the majority of whom have direct lived-experience of BBS, either personally or through family members. This ensures that the patient voice is at the heart of the Charity, shaping its services and projects and improving outcomes for all affected.  Our Values inform all that we do - we are:

Committed and Passionate: We are committed and passionate about supporting and empowering those affected by BBS to achieve the best possible outcomes.  

Inclusive and Community Minded: We value diversity and ensure our services are inclusive and accessible to everyone in the BBS community. 

Experienced and Understanding: The voice of our community is at the heart of our work. We use our deep experience and understanding of BBS and its impact to inform our services.   

Positive and Forward Looking: We maintain a positive attitude towards challenges, and stride forwards with optimism and open to opportunity.  

Collaborative: We actively seek opportunities to connect, engage and partner with others, nationally and internationally, sharing best practices to enhance our work and strengthen our impact. 

Equality, diversity and inclusion policy

Bardet-Biedl Syndrome UK is committed to fostering a fair, inclusive, and discrimination-free workplace where all employees feel valued and respected. Our approach to fairness is embedded in our policies, practices, and organisational culture.

We ensure equity by actively promoting inclusive recruitment, ensuring opportunities are open to all, and removing barriers that may disadvantage individuals from underrepresented groups. Our staff and leadership participate in ongoing Equality, Diversity, and Inclusion (EDI) training to recognise and challenge bias, ensuring our workplace remains welcoming to people of all backgrounds.

We have clear anti-discrimination policies in place, alongside a robust reporting process for any concerns related to unfair treatment or bias. Employees are encouraged to voice their experiences, and we take proactive steps to address issues swiftly and effectively. 

Additionally, we foster an open and supportive environment where diverse perspectives are celebrated. By actively engaging with our staff and community, we continuously improve our approach to fairness, ensuring our workforce reflects the values of inclusion, respect, and equal opportunity.