The Laurence-Moon-Bardet-Biedl Society is the only registered charity supporting people with Laurence-Moon-Bardet-Biedl Syndrome, their families and carers. The aims of the Society, according to its constitution, are: to preserve and protect the health and promote the welfare of persons suffering from LMBBS, and to advance the education of the medical and educational professionals and the general public on the subject of LMBBS.
For information regarding the clinical features of LMBBS, click here for our information booklets.
All members of the Management Committee are volunteers. They have children/grandchildren with LMBBS 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 Society moving forwards.
Can you help... In preparation for the opening of the Centre for Rare diseases next year they would like to invite about 10 patients to an event where we can explore how a resource room might be used and how they might furnish it etc. Click here for more information.
Please help... It's been a year since the publication of the UK Strategy for Rare Diseases, which aims to ensure that people living with a rare disease have access to the best care and treatment that health and social services can provide. There's been much progress but there is a risk that all 51 commitments in the UK Strategy for Rare Diseases will not be implemented. Please click here to find out how you can help to ensure that patients affected by rare conditions and their families do not lose out.
17th, 18th, 19th April at the Hilton Hotel, Northampton. For information and a booking form for the conference please look under the conference tab on the website or contact Christine Humphreys, +44(0)1633 718415, firstname.lastname@example.org
The Society produces newsletters, conference reports, holds an annual family conference, and co-operates with research relevant to the Syndrome. Through the printing and distribution of information booklets, the Society has raised awareness of the Syndrome and, as a direct result, membership has more than trebled in the past two years. The Society now supports over 200 families and communicates with over 250 professionals involved in their care.
There are no membership fees and no charges are made for information - the work of the Society relies entirely on donations. Please look at our Support Page for details of how you can help.
*Seen through other eyes - The Seeing Ear poetry competition*
If you know someone 18 or under who is visually impaired, has dyslexia or a disability that makes it difficult to read printed books they could win £150 in our first ever poetry competition! Entry is free and as well as £150 for first prize there will be runners up prizes and the chance to be included in our competition anthology. Please see http://www.seeingear.org/the-seeing-ear-poetry-competition for more details.
You can now donate online through www.justgiving.com
We thank you all for your continued support
LMBBS is a registered charity
Charity no: 1027384
Chairman Mr Philip Humphreys