General Enquiries

General enquiries email:

Registered Address: 43 Balton Way, Dovercourt, Harwich, Essex, CO12 4UP.

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

Charity Team

Fundraising Support

Christine Saxon
Fundraising Officer
07512 198484

Office Manager

Liz Loughery
Office Manager
07421 312 731

Friends of BBS UK

Kevin Sales
01892 685311

BBS Clinics Support Team

Tonia Hymers
Service Manager, BBS UK Clinics Ltd
07591 206680

Angela Scudder
Support Officer: London Service
07591 206788

Amy Clapp
Support Officer: Birmingham Service
07591 206787

Liddy Vincent
Assistant Support Officer
07568 601973

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.