Laurence-Moon-Bardet-Biedl Society (LMBBS)

Laurence-Moon-Bardet-Biedl Society (LMBBS)

Charity information

Laurence-Moon-Bardet-Biedl Society (LMBBS)

LMBBS is a voluntary organisation and is the only registered charity supporting people with the Laurence-Moon-Bardet-Biedl Syndrome, their families and carers.

Founded 1993

  • Mission statement

    We are a group of parents, family members, affected individuals and interested professionals and all members of the committee are volunteers.

    The main objectives of the Society are:-
    -To preserve and protect the health and promote the welfare of persons affected by the Laurence-Moon-Bardet-Biedl Syndrome and their families
    -To advance the education of the medical and educational professions and the general public on the subject of Laurence-Moon-Bardet-Biedl Syndrome and its implications for the family.

    The main activities the Society undertakes to achieve these objectives are:-
    -Provision of helpline
    -Production of information leaflets
    -Organisation of an annual weekend family conference, bringing those with the syndrome together with interested professionals and experts, providing families and affected adults with access to the latest medical information and research, in addition to vital social opportunities
    -Production of regular newsletters and an annual conference report
    -Regularly updated Web Site

    The Laurence-Moon-Bardet-Biedl Syndrome is a rare, recessively inherited
    disorder which affects approximately 1 in 100,000 babies born.
    The main characteristics are:-
    -Visual impairment, often leading to blindness
    -Extra fingers and/or toes
    -Obesity
    -Developmental delay
    -Speech and coordination problems
    -Learning difficulties
    -Kidney and urological problems
    -Other health problems may occur

  • Aims

    Laurence-Moon-Bardet-Biedl Society (LMBBS) aims to:

    • To preserve and protect the health and promote the welfare of persons affected by the Laurence-Moon-Bardet-Biedl Syndrome and their families.
    • To advance the education of the medical and educational professions and the general public on the subject of Laurence-Moon-Bardet-Biedl Syndrome and its implications for the family
  • Overview

    Established: August 1993

    Registered Charity Number: 1027384

    Board members: 11

    Volunteers: 11

    Phone number: 01633718415

    Address: 1 Blackthorn Avenue Southborough Tunbridge Wells Kent TN4 9YA

    View charity accounts on the Charity Commission website