Welcome....
Bardet-Biedl Syndrome UK is the only registered charity supporting people with Bardet-Biedl Syndrome, their families and carers. The aims of the Charity, according to its constitution, are: to preserve and protect the health and promote the welfare of persons living with BBS, and to advance the education of the medical and educational professionals and the general public on the subject of BBS.
For information regarding the clinical features of BBS, click here for our information booklets.
All members of the Management Committee are volunteers. They have children with BBS or have the syndrome themselves, and they willingly give up their time to provide support, raise funds and generally do as much as they can to keep the Charity moving forwards.
The Charity produces newsletters, conference reports, holds an annual family conference, and is an integral member of the specially commissioned multi-disciplinary BBS Clinics. Awareness of the Syndrome has grown massively as a result and the Charity now supports over 500 families and communicates with over 130 professionals involved in their care.
There are no membership fees and no charges are made for information - the work of the Charity relies entirely on donations. Please look at our Support Page for details of how you can help.
Take a look on our events page for further information about this upcoming social event.
Conference 2018
Conference 2018 is on 20th-22nd April and will held at the Hilton Hotel, Northampton.
The annual conference is a fantastic weekend full of learning, networking and socialising opportunities. For the children there are activities available, a crèche for the younger guests and a program of speakers arranged on the Saturday for adults/carers. There are social activities to get involved with ensuring many who attend keep coming back every year.
Can you help?
Are you interested in volunteering for BBS uk?
If yes, please fill in our volunteer form and return to us via email or post.
BBS UK are working on a grant project called Breaking Down Barriers, for further info please click here.
"We are very excited to report that BBS UK have been successful in their bid for a grant from Genetic Disorders UK as part of their Jeans for Genes campaign 2016. The grant is to enable us to develop further information resources for our young members. More information will be available over the coming months. Our thanks to everyone at Genetic Disorders UK, we look forward to working with them over the coming year. http://www.jeansforgenesday.org/.”
You can now donate online through www.justgiving.com
We thank you all for your continued support
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BBS UK is a registered charity
Charity no: 1027384
Chairman Richard Zimbler (acting chair) |
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Twitter @BBS UK1
Main Sections in our website...
- BBS clinics
- Benefits
- Conference
- Contact
- Education
- Fundraising News
- Home
- Research
- Support
- Visually Impaired holidays
- Links
- Technical
BBS medical booklet, view here.
Winter newsletter, view here.
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