It is important for BBS UK to provide vital outreach to support with transitions through health diagnosis and progression of Bardet-Biedl Syndrome. We encourage steps towards independence with an emphasis on empowering our young people, adults and families in ensuring they feel in control during a time of rapid change.
Click on the link that follows to read a Transition Handbook called My Life, My Future - this booklet has been put together by Bardet-Biedl Syndrome UK (BBS UK), to help young people who have BBS achieve the best life possible. It provides some useful information to help young people on their way to being more independent and to help them think about how they would like to live their lives. Transition Handbook 2019
New Families Contact
Claire Anstee - New Families Contact
Claire Anstee has a young child with BBS and knows too well how difficult the early days of diagnosis can be. If you feel you would benefit from talking to another parent about the syndrome and diagnosis, Claire is more than happy to listen and help in any way she can. She can be contacted by telephone after 4.30pm, Monday to Friday.
+44 (0) 604 492916
Monday to Friday after 4.30pm
Stefan Crocker - Adult Contact
I was diagnosed with BBS in 2003 and started attending the annual Family Conference in 2004. At this point I was not very confident in my visual impairment. During the ensuing years I have developed many skills for maximising life as a visually impaired person, this includes socialising, travelling and studying at university. I also feel I have honed a good mental approach to coping with day to day issues of living with BBS. With all this in hand I believe I am a good contact to help enrich the lives of new and existing BBS adults.
Monday to Friday 10.00am to 8.00pm
Rachael Foley - Adult Contact
My name is Rachael, I'm 38 and live in Stockport. I was diagnosed with Retinitis Pigmentosa at the age of 16, and after genetic testing in 2012 I was diagnosed with BBS1. I enjoy socialising with friends and family, going to the theatre and concerts and outdoor activities. Through my own experience of living with BBS as an adult, I am able to provide advice and guidance to help others who may be socially isolated , and finding things difficult, but who may benefit from speaking to someone who also has the same condition.
Monday to Friday 9.00am to 5.00pm
CONNECT, FOLLOW, JOIN
We understand how important it is connect and share experiences of the challenges we face daily. Our Facebook page facilitates the development of an online community that self supports with members helping each other through the challenges we face.
Open Facebook Page - BBS UK has an open Facebook page, Bardet-Biedl Syndrome UK, from which we share news and information about local and national news stories that we think are important.
Closed Facebook Group - Our closed Facebook Group is somewhere that you can do the same and is also a lifeline to many, especially for the newly diagnosed, and is a chance to talk to other members who understand. BBS UK may let you know news or events that are important to you on the ‘group’ page but the group is primarily somewhere for you to discuss the issues that matter to you. If you would like to join, visit the BBS UK Closed Group and send us a request to join. Someone will contact you to check your application and then give you access to the group.
Twitter - BBS UK is also on twitter so look us up and get 'tweeting' @LMBBS1