The Newsletters have always been an important aspect of the work of the Charity and are intended to keep members informed and supported, and hopefully, ease the feelings of isolation that can occur with such a rare syndrome. 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. Our Newsletters are free to members and over 1000 copies go out each year to those diagnosed with BBS and their families and carers. In it you will find:
- Information on our projects and services
- Family support
- Fundraising endeavours
- Conferences and research
- Our Young People’s Group
- Personal stories from our members
- Information on health and well being
If you have news or information you think we might like to include in the newsletter please get in touch by email on firstname.lastname@example.org. We are also glad to get feedback and ideas for articles.
Read our latest newsletter and catch up on old news by clicking on the links below.
Click on any button to view / download newsletter