The BBS Family Association is organized by members of the BBS community in North America. The Association sponsors conferences and promotes advocacy for rare disease research. Learn more at  


BBSFA Facebook page: A forum for sharing information about Bardet-Biedl syndrome and activities of the BBS Family Association.


BBS Friends: A closed group for LMBBS children/adults, their friends and loved ones, created by Teresa Scruton, grandmother of Ian Webster, who has LMBBS. Anyone can be added to the group by any member, but only members see posts.


Families of Bardet-Biedl Syndrome: A closed group for individuals, families and friends affected by BBS with many great opportunities to meet and learn about BBS. 

Public blogs:

   By Nicole Love, mom to Savannah and Xander


  By Shawnie Pothier, mom to Lucy


  By Katherine Eby, mom to Naomi and Emma


  By Emil Chalhoub, adult with BBS


  By Maxie McGlohon, mom to David