Useful links:

 

Global Organizations and Resources

  1. Bardet-Biedl Syndrome International Federation
    • Central network for national associations and BBS patient support groups.
    • Website: bbs-foundation.org
  2. Bardet-Biedl Syndrome Foundation (USA)
    • Dedicated to improving the lives of individuals and families affected by BBS.
    • Website: bardetbiedl.org
  3. BBS UK (Bardet-Biedl Syndrome UK)
    • A registered charity supporting people with BBS, their families, and carers in the UK.
    • Website: bbsuk.org.uk
  4. Clinical Registry Investigating Bardet-Biedl Syndrome (CRIBBS)
    • The largest worldwide registry studying the long-term health of individuals with BBS, based at Marshfield Clinic Research Institute.
    • Website: marshfieldclinic.org
  5. Center of Excellence for BBS at Marshfield Clinic Health System
    • Comprehensive clinical evaluations and individualized treatments for BBS patients in North America.
    • Website: marshfieldclinic.org
  6. BBS Family Association
    • A nonprofit providing support, information, and promoting research for individuals and families affected by BBS.
    • Website: bardetbiedl.org
  1. Association Bardet-Biedl (France)
    • Offers support and raises awareness for BBS in France.
    • Website: bardetbiedl.com
  2. ASBBI (Associazione Sindrome Bardet-Biedl Italia)
    • Support and advocacy for individuals with BBS in Italy.
    • Website: Not available www.asbbi.it
  3. Bardet Biedl Stichting (Netherlands)
    • National support for BBS patients and families in the Netherlands.
    • Website: https://www.bardetbiedlsyndroom.nl/

Rare Disease Advocacy Organizations

  1. National Organization for Rare Disorders (NORD)
    • Provides information and resources for rare diseases, including BBS.
    • Website: rarediseases.org
  2. EveryLife Foundation
  3. Global Genes
    • Advocacy, education, and support for rare diseases like BBS.
    • Website: globalgenes.org
  4. Obesity Action Coalition (OAC)
    • Support for obesity-related conditions, which are often associated with BBS.
    • Website: obesityaction.org

Facebook Support Groups

  1. Bardet Biedl Syndrome Group  https://www.facebook.com/groups/113980661969875/ 
  2. BBS Awareness  https://www.facebook.com/groups/53304437850/
  3. Bardet Biedl Family Support Group  https://www.facebook.com/groups/2788088004622612/
  4. Bardet Biedl Syndrome Canada  https://www.facebook.com/groups/1479247428997328/
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