1. Bardet-Biedl Syndrome UK
Charity No: SCO41839
Tonia Hymers
Angela Scudder
Amy Clapp

2. What is Bardet-Biedl Syndrome?
Bardet-Biedl Syndrome is a rare, recessively inherited genetic disorder, affecting appx 1 in 100,000:
Visual impairment
Emotional immaturity
Obesity
Learning difficulties
Extra fingers and/or toes
Kidney abnormalities
Developmental delay
Plus many other health issues occur
Speech and Language difficulties

3. Bardet-Biedl Syndrome UK
BBS UK is a national charity supporting 190 children, 350 adults, their families and carers.
Registered Charity governed by Constitution
8 Trustees (/11) 3 Observers
Appx 30 volunteers
Third Sector Contract with NHS England
Subsidiary company, BBS UK Clinics
Ltd, manages contract

4. BBS UK Clinics Ltd Wholly owned subsidiary of BBS UK
Manages Third Sector Contract with NHS England
Facilitation and support services to
specialist BBS clinics across London and Birmingham
8 clinics each at GOSH, GUYS, BCH, QEH
At each clinic patients see around 6 specialists
3 staff members:
Service Manager: Tonia
Support Officer, London: Angela
Support Officer, Birmingham: Amy

5. Weekend Family Conference
Hilton Hotel, Northampton, Friday to Sunday
2017 was BBS UK’s 25th Annual Family Conference
200 family delegates, 26 professionals, 20 care team members
Formal morning programme / Afternoon Workshops
Research collaboration (memory test/smell test/lung function)
Children and Young People: Drayton Manor or Bowling
Friday Evening: New Families Meeting, Adults Reception etc
Saturday Evening: Crafts, Family Quiz and Raffle

6. Information / Resources / Support
Twice Yearly Newsletters
Annual Conference Report
Medical Information Booklet
(Information Standard Accredited)
Who Are We and How Can We Help (pamphlet)
Including form for Friends of BBS UK
Transition Handbook
(J4G Funded, In Development)

7. Information / Resources / Support
Education Booklet
(J4G Funded, In Development)
Introducing BBS Booklet (English and Urdu)
(BDB/BBS UK Funded, In Development)
Facebook / Twitter / YouTube
Website:
Activity and Social Weekends and Family Days

8. Young People’s Activities
Activity Weekend
2015 & 2016: Avon Tyrrell, New Forest
2018: Whitemoor Lakes
Theatre Trips
Zoo Trips
Duxford Xmas Party
Conference Trip to Drayton Manor Theme Park
Young Peoples Group

9. Adult’s Activities Facebook Group
Facebook Group
Adult’s Reception at Annual Conference
Adult’s Social Weekend in Birmingham
Bowling
Frankie & Benny’s
Afternoon Tea
Theatre
Curry House

10. Breaking Down Barriers Project
Issues / Evidence of Need
Only 7% of BBS UK Conference Delegates are from Minority Ethnic Groups despite these groups making up 40% of BBS UK membership
57% of children attending BBS clinic at BCH are from Minority Ethnic Groups yet only 23% of adults attending BBS clinic at QEH are from these groups
GREATER ENGAGEMENT AND UNDERSTANDING NEEDED

11. Breaking Down Barriers Project
Aims/Outcomes
Improve engagement with Asian families
Improve access to BBS UK events/activities:
Feel represented, understood, supported
Information available in appropriate language
Improved understanding of BBS
Improved ability to make informed choices

12. Breaking Down Barriers Project
Project Plan
Information
Newsletters: Include relevant articles
Booklet: Information in Urdu
Website: BDB Information and News
Support
Asian Mentor/Translator
Activities
Small gatherings in Birmingham hotel for local Asian Families

13. Breaking Down Barriers Project
Progress / Issues
Information
Medical Booklet too technical – developing ‘Introducing BBS’ Booklet for translation
Support
Asian Mentor/Translator: developed own relationship rather than built on behalf of BBS UK
Activities
Two local events
Coffee Morning (May 17)
Information, Support, Friendship & Lunch! (Sept 17)

14. Breaking Down Barriers Project
Looking Ahead: Build on 2017
Information
Complete translation of ‘Introducing BBS’
Record booklet for Website/YouTube
Support
Continue maintaining regular contact with local families: Development of Booklet/Events
Activities
Information, Support & Friendship Lunch! (Feb 18)
BBS UK Conference Weekend
Young Peoples Activity Weekend

15.
Tonia Hymers:
Angela Scudder:
Amy Clapp: