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: firstname.lastname@example.org.
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.
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.
Hint: save the leaflet by right clicking on the link