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Bardet Biedl Syndrome Foundation

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

Big Changes at the LMBBS Association

At the link below you’ll find a letter from the President and Board of the LMBBS Association that explains big changes we are making in the association. The most important two changes are:

1) We are changing the name of the association to the Bardet Biedl Syndrome Association. The reason for this change is that LMBBS is no longer used in the medical community. Anyone who is diagnosed with the syndrome today only hears of Bardet Biedl Syndrome. We want anyone who is affected by BBS to be able to find us easily–and that means having a name that everyone will immediately recognize.

2) We are changing the association into a 501©3 non-profit. The reason for this change is to make it easier to raise funds to support research and other services for families affected by BBS. 

You can read more about the changes, including our new Vision and Mission statements in the letter from the President and Board. 

Click here to download the letter in PDF format.