Bardet Biedl Syndrome (BBS) is a complex disorder caused by cilia, the hair-like structures in many cells, malfunction. People with BBS may have extra fingers and toes, kidney failure, learning or developmental differences, obesity which is due to never feeling full or sated, and a progressive type of retinitis pigmentosa that starts in early childhood. There are at least 20 different genes that can cause BBS. Because vision loss is progressive in this condition, children should be monitored closely to be sure their teachers and friends know what they are seeing and when they might need accommodations. There is a lot of research going on in the Drack Research lab and the WIVR into why people with BBS lose vision and how to slow, prevent or restore it.
Genereviews: Bardet-Biedl Syndrome
Bardet Biedl Syndrome Family Association (BBSFA)
Research to Prevent Blindness
The John and Marcia Carver Nonprofit Genetic Testing Laboratory