Welcome....

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.

Paralympic Dream

Congratulations to Shane Ryan from Limerick in Southern Ireland, for being part of the first Irish crew to qualify a boat for the London Paralympics in rowing.  Shane says, “It is a dream come true to be rowing.  It’s very exciting, especially as it is in London and we at the Paralympics are gearing it as the ‘HOME GAMES’. We are currently training very hard and are very motivated to reach the goal that we have set ourselves.”

Read more about Shane's acheivement in our Spring Newsletter

Or visit www.london2012.com/paralympic-sport
              www.paralympics.ie/sport/rowing


Conference 2013

19/20/21 April 2013 at the Hilton Hotel, Northampton.  For information and a booking form for the conference please contact Christine Humphreys, +44(0)1633  718415, chris.humphreys4@ntlworld.com

The Gang

LmbbsThe 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, BUY....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.

Just Giving

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
Office of Scottish Charity Regulator SC041839

Chairman  Mr Philip Humphreys
President  Professor Philip Beales BSc LMSSA MD FRCP
Patrons     Baroness Helena Kennedy of the Shaws Q.C
                 Ryan Jones BSc (Hons)

FSCB - give with confidence
 
 
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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. The Society produces newsletters, holds an annual family conference, BUY....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.