Support Services

Advice Service

The BBS UK Advice Service is a support and advocacy service, set up in 2020. Our Advice Service manager and Advice Worker, both registered social workers, help individuals with BBS to access the local support they need across health, education, and social care, including negotiating support packages, helping with housing issues and benefits applications, and with future planning.

That might include accessing support for sight and sensory or physical requirements, getting help with education and learning disabilities, accessing benefits and other practical and financial support needs as well as with mental health support. Most often we are helping with a combination of these needs.

People with BBS do not fit into one statutory support service, and the BBS Advice Service is designed to ensure that our service users are not passed and lost between services. Our work supports people to navigate often complex systems to access the help and support they need.

We work in a way that suits service users, supporting them to self-advocate where possible, whilst forming positive working relationships with the teams that support them. We recognise the pressure that professionals and care providers are under, often working within a framework of limited resources. Our role is to work alongside other agencies, and one of our goals is to equip them with insight and a better working knowledge of BBS.

Advice Service Team

Our Advice Service Team are able, through their experience in previous roles as local authority and charity sector social workers, to not only understand the systems and processes but to challenge decisions and advocate for our members.

Communication is key; we will often be asked to step in when communication has broken down. Sadly, that is regularly due to a lack of understanding of the complex, multifaceted issues experienced by people with BBS.

Our Advice Service Team acts as a go-between, ensuring that people feel acknowledged and understood. The team also coordinates and maintains ongoing conversations.

BBS UK Social Worker / Advice Service Manager
BBS UK Social Worker / Patient Liaison Officer


Our referrals come mainly from our BBS clinics, but we also see individuals, who have found us online or by word of mouth, family members, and people referred to us through the NHS or their GP.

Supporting individuals in navigating and securing social care is the most requested issue we help with, alongside housing, benefits, and future planning. In recent months we have also seen more requests for support on education as schools continue to struggle to maintain levels outlined in EHCPs.

To access the BBS UK Advice Service, contact Rebecca Perfect.

IT Fund

With the increasing reliance on digital technology, limited access or expertise can be a huge barrier to building communities, accessing health and social care, and education.

BBS UK can offer practical and financial support to assist with the purchase of devices including laptops, tablets and computers, to support with access to education, medical and social care appointments and social opportunities, all of which are crucial for maintaining good mental and physical health and reducing feelings of isolation and loneliness.


Scheme Guidelines - FAQs

Slimming World

BBS UK Referral

Bardet-Biedl Syndrome UK, in partnership with Slimming World on Referral, are pleased to offer a free 12-week membership to adults who have BBS and would like to lose weight.


  • This offer is available to adults diagnosed with BBS, who would like to lose weight.
  • Please identify a local Slimming World group that you/your family member can access every week.
  • The person who cooks most of the meals in the household, must support the person referred.
  • There are a limited number of places available which will be allocated on a first come, first served basis, to those with a BMI greater than 30, (with priority given to those with a BMI greater than 40).

In addition to the weekly Slimming World meetings, we aim to meet up as a BBS UK Slimming World group on a monthly basis via Zoom, to share tips and to support each other.

All BBS UK members who are already Slimming World Members can join this Zoom meeting, alongside those taking part in the referral scheme.

To access the scheme simply call the ‘Slimming World - on Referral’ team on 01773 302475 (BBS UK members only)

We have gathered together a collection of useful links and resources for other charities and organisations which offer information, advice and support for adults, young people and their families and carers.