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With an increasing number of people and groups sharing common goals and working on common activities, it became clear that more could be achieved by working together than each group working alone. 

The Bardet-Biedl Syndrome International Federation was created to serve as the central body for a network of national associations and other BBS patient support groups.



The main objective of Bardet-Biedl Syndrome International is to create a platform for collaboration between national associations, support groups and networks, people with BBS and their families, and researchers and professionals working on Bardet-Biedl Syndrome. In more detail, the objectives of Bardet-Biedl Syndrome International are as follows :

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To find and build a network of all associations and families of people with BBS so that they perceive the federation as a reference point for creating a strong and united Bardet-Biedl community

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Promote, support and stimulate the exchange of knowledge and understanding of BBS at the international level between national associations to avoid unnecessary duplication of resources

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Coordinate international research efforts by bringing together research institutes and relevant professionals,

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To facilitate and promote communication between patients, health professionals, researchers and other organisations that support people with BBS.

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