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Bardet Biedl Syndrome Foundation

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

Join the BBSFA Directory

The new BBS registry gathers information about BBS families for researchers. We are also launching a BBSFA directory to gather information for families.

We want all members of BBSFA, new and old, to be able to easily find other families in similar circumstances. That may be others in your state who have dealt with social service agencies. It may be finding parents of children of similar age. It may be creating a group of BBS adults who want to talk about job searches. It may be seeking help finding a “BBS-friendly” endocrinologist in your area.

Whatever the case, right now it is too hard to connect with other BBS families with shared interests. Making it easier to connect is the goal of the BBSFA directory. It’s a directory that only members of the association will have access to. It will contain basic information about each family or individual that is a member of the association and whatever contact details you choose to share. If you’re registering for the 2014 conference, the information for the directory is part of the registration process. It will also be part of the membership application from now on. If you’re already a member but aren’t yet registering for the conference, please contact us.