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Bardet Biedl Syndrome Family Association

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

CRIBBS Worldwide!

CRIBBS, the BBS clinical registry is off to a flying start. Not only have we been able to raise enough funds to accelerate the process of adding people to the registry, but now CRIBBS has received all the necessary approvals to include people who aren’t in the United States. Because there is personal medical information involved there are many steps of approvals required to reach this stage. Dr. Haws and his team have gone the extra mile to get it done this quickly. Being able to include people from all around the globe will make the BBS registry that much more useful to researchers.

If you know someone affected by BBS who hasn’t signed up for the registry yet, no matter where they are in the world, send them here.

Further proving the incredible job the CRIBBS team has done, the software developed for CRIBBS is now going to be used by other rare diseases for clinical registries. In other words, all the hard work and dollars invested in CRIBBS are already starting to change the world.