National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Bardet-Biedl syndrome

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My question is about a student with Bardet-Biedel syndrome who has behavior problems. Is this common? What should we do if the behavior problems continue?

The following information may help to address your question:


Are behavioral problems common in people with Bardet-Biedl syndrome?

Behavioral problems have been reported in some people with Bardet-Biedl syndrome (BBS). The types of problems vary for each person but may include:

  • Depression
  • Throwing temper tantrums
  • Misreading social cues like body language and expressions
  • Obsessive behavior 
  • Not paying attention
  • Preferring a strict routine
Some children have features of autism, but they usually do not meet the criteria for diagnosis.[1][2]
Last updated: 10/2/2015

How can we manage the behavioral problems associated with Bardet-Biedl syndrome?

Managing the behavior problems of Bardet-Biedl syndrome depends on which issues are present in each person. Children with this syndrome should have a developmental assessment or educational evaluation to develop a personalized plan.[3] Early intervention is important so that children reach their highest potential.[4]
Last updated: 10/2/2015

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

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GARD Information Specialist

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  1. Barnett S, Reilly S, Carr L, Ojo I, Beales PL, Charman T. Behavioural phenotype of Bardet-Biedl syndrome. J Med Genet. December 2002; 39(12):e76. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1757216/?tool=pubmed.
  2. Kerr EN, Bhan A, Héon E. Exploration of the cognitive, adaptive and behavioral functioning of patients affected with Bardet-Biedl syndrome. Clinical Genetics. May 19, 2015; http://www.ncbi.nlm.nih.gov/pubmed/25988237.
  3. Elizabeth Forsythe and Philip L Beales. Bardet-Biedl Syndrome. GeneReviews. April 23, 2015; http://www.ncbi.nlm.nih.gov/books/NBK1363/.
  4. Bardet Biedl Syndrome. NORD. 2007; http://rarediseases.org/rare-diseases/bardet-biedl-syndrome/.