01709210151 / 07716135940 kerry.leeson@alstrom.org.uk

Registered Address: 1 Blackthorne Avenue, Southborough, Tunbridge Wells, Kent, TN4 9YA
Contact address: 43 Balton Way, Dovercourt, Harwich, Essex, CO12 4UP
Telephone Number: 07805 685342
Email: tonia.hymers@bbsuk.org.uk
Email: info@bbsuk.org.uk
Website:www.bbsuk.org.uk
Registered Charity Number: 1027384 & SC041839
Prevalence of BBS: 1:100,000

What is Bardet-Biedl Syndrome (BBS)?

Bardet-Biedl Syndrome is a rare, recessively inherited disorder which affects approximately 1 in 100,000 babies born. The main symptoms of this complex condition are:

  • Visual impairment, often leading to blindness
  • Extra fingers and/or toes
  • Obesity
  • Developmental delay
  • Speech and Co-ordination difficulties
  • Learning difficulties
  • Kidney abnormalities
  • Other health problems may occur

What support is available?

BBS UK (formally LMBBS) is the only UK charity providing support and information to those with BBS, their families and carers. The charity is established t0:

  • preserve and protect the health and promote the welfare of persons diagnosed with Bardet-Biedl Syndrome and their families
  • advance the education of the medical and educational professions and the general public on the subject of Bardet-Biedl Syndrome and its implications for the family

BBS UK produces twice-yearly newsletters and an annual Conference Report, which records the highlight of the year, the annual Weekend Family Conference, which brings interested professionals and those with BBS, their families and carers, together for a formal conference programme and social weekend. The charity maintains a website and Facebook page and through these has developed a community which self supports, with members helping each other through the challenges often faced. A general helpline and a New Families contact are also available

BBS UK, together with Great Ormond Street Children’s Hospital, Guys Hospital, London, Birmingham Children’s Hospital, and Queen Elizabeth Hospital, Birmingham have been commissioned by NHS England to provide multi-disciplinary clinics for Bardet-Biedl Syndrome patients. BBS UK is an integral member of this valued multi-disciplinary team and provides information and support to the patients and their families/carers, before, during and after clinics

Information provided by BBS UK, 17th July 2017

Breaking Down Barriers Project Overview

BBS UK aims to develop a greater understanding of and provide greater support to ethnically diverse families and individuals and to facilitate greater access to the Charity’s services and to the specialised BBS Clinics.

The project will cover three main areas:

  • Ensuring all newsletters contain relevant information for the entire BBS UK membership demographic and all information leaflets are recorded in an appropriate language for South Asian members for the BBS UK YouTube channel
  • Organise small gatherings in an appropriate central location to encourage families to meet for mutual support
  • Identify someone from within their membership who can be the point of contact for South Asian families, who can provide support at the specialist clinics and translate information. This will hopefully lead to an employed position.

Year 2 Project
The Breaking Down Barriers Advisory Group met in November 2017 to review the grant monitoring forms for year 1 projects and to consider the action plans submitted for year 2. Following successful completion of year 1, they were pleased to approve the plan submitted by BBS UK to carry out the following work:

  • A continuation of their work from year 1
  • Develop and support BBS Champions
  • Ensure that their newsletters and website are accessible and illustrate a true representation of their members
  • Offer a range of activities to help improve their engagement with families, build on relationships, and provide information, support and encouragement to attend clinics.