Bardet-Biedl Syndrome UK Medical Information Booklet

This booklet has been produced by Bardet-Biedl Syndrome UK to promote a greater understanding of Bardet-Biedl Syndrome and the recommended care pathway.  It is aimed at the medical and healthcare professionals involved in the care of Bardet-Biedl Syndrome patients and also those living with the syndrome, their parents and carers, with the aim of encouraging better self-advocacy and health care management.

The information contained within this booklet has been provided and checked by the BBS Specialist Clinics team and where possible is supported by research and published articles.  A bibliography of references and useful publications can be found at the back of the booklet. For further information, or to order a copy, contact:

Bardet-Biedl Syndrome UK Medical Information Booklet



Bardet-Biedl Syndrome UK Newsletter and Conference Report

The Newsletter is published twice yearly and covers a wide range of issues for people with Bardet-Biedl Syndrome and the families, carers and professionals involved in their care. It also gives information about the Charity and updates on fundraising, conferences and research. There is always a personal profile and members regularly contribute to the content of the newsletter.

The conference report is published once a year, and covers the whole weekend of the BBS UK annual family conference.


Spring Newsletter 2016

To read our Newsletters & Conference reports please click on the links


Who are we & How can we help?

This small tri-fold leaflet includes basic information about Bardet-Biedl Syndrome and BBS UK.  A standing order form is attached for those who wish to become a ‘Friend’ of the Charity.

Read this leaflet as a word document Who are we & How can we help.doc or as plain text.

Hint: save the leaflet by right clicking on the link


Other Pages in this section...

Problems reading this site?

If you have any difficulties with vision you can increase or decrease the size of the text using these 'plus' and 'minus' buttons. Just keep clicking until the text is the size you prefer.

Decrease text sizeNormal text sizeIncrease text size
© 2019 | Privacy and Terms of Use | Links | Sitemap | Text Only