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Bardet Biedl Syndrome Foundation

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

BBSFA Conference 2014!

We’ve officially set a date and site for our 2014 Conference.

We’ll be meeting together at the University of Iowa in Iowa City, IA from June  26th to the 29th. Our hosts are Dr. Val Sheffield and Dr. Arlene Drack. You may recognize Dr. Sheffield’s name from the article about BBS and cilia from the Howard Hughes Medical Institute, “The Importance of Being Cilia.” Unfortunately the Institute has changed their website and the piece is no longer available. Contact us if you’d like a PDF copy.

Dr. Drack has made waves recently with her work on TUDCA, a chemical compound, and BBS. Early results suggest some promise that TUDCA may help slow retinal degeneration in some BBS patients.

The first thing you might notice about the conference is that it’s four days. We’ll open the conference on Thursday evening and a have a few optional community gatherings on Sunday morning.

The added time for the conference will be used to add two important elements to the conference based on feedback from members:

1) More information on living with BBS from doctors who are treating patients.

2) More opportunities to meet, interact and learn from other BBS families.

More information is coming in the next weeks and months as we finalize the schedule, set prices to cover our costs and begin the registration process.

Watch this space!