Charity Team

General Enquiries & Information

Léonie Hudson
07510 384242

Service Manager

Tonia Hymers
07591 206680

Advice Service

Rebecca Perfect
07421 455 649

Fundraising Support

Christine Saxon
07421 453896

BBS Clinics Support Team

Angela Scudder
Patient Liaison Officer: London Service
07591 206788

Amy Clapp
Patient Liaison Officer: Birmingham Service
07591 206787

Send a message

We welcome your feedback, both good and bad. It helps us to appreciate the things we are good at and to work out what still needs to improve. If you have something that you would like to tell us about one of our services, events or even this website, then please email us.

    Social Media

    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