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 bardetbiedl.org.
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.