Bardet-Biedl Syndrome UK www.bbsuk.org.uk Charity No: 1027384 SCO41839 Tonia Hymers Angela Scudder Amy Clapp

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

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

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

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

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)  

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: www.bbsuk.org.uk Activity and Social Weekends and Family Days  

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  

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

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

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

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

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)

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

www.bbsuk.org.uk info@bbsuk.org.uk Tonia Hymers: tonia.hymers@bbsuk.org.uk Angela Scudder: angela.scudder@bbsuk.org.uk Amy Clapp: amy.clapp@bbsuk.org.uk