Patient resources for Joubert syndrome and related disorders
Places to find practical help and support. Each organization sets its own services and eligibility.
Communities and additional support
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Joubert Syndrome & Related Disorders Foundation (JSRDF)
Condition-specific resource · Based in the United States
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Bardet-Biedl Syndrome Foundation (BBSF)
General support · Based in the United States
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Ciliopathy Alliance
General support · Based in the United Kingdom
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UW Hindbrain Malformation Research Program
General support · Based in the United States
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JSRDF Joubert Syndrome Support Group (Facebook)
Condition-specific resource · Peer support
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The Mighty — Joubert Syndrome Community
Condition-specific resource · Peer support
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Further information
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Orphanet condition information
Condition-specific resource
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