Patient resources for Open spinal dysraphism
Places to find practical help and support. Each organization sets its own services and eligibility.
Communities and additional support
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Fetal Health Foundation
General support · Based in the United States
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Illinois Spina Bifida Association (ISBA)
General support · Based in the United States
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International Federation for Spina Bifida and Hydrocephalus (IF)
General support
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Shine (UK)
General support · Based in the United Kingdom
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Spina Bifida Association (SBA)
General support · Based in the United States
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Spina Bifida Coalition of Cincinnati (SBC)
General support · Based in the United States
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Spina Bifida Resource Network (SBRN)
General support · Based in the United States
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Inspire — Rare Diseases Group (Spina Bifida discussions)
General support · Peer support
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Spina Bifida Support Group (Facebook)
General support · Peer support
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The Mighty — Spina Bifida Community
General support · Peer support
Visit peer community -
The Spina Bifida Parenting Village (Facebook)
General support · Peer support
Visit peer community
Further information
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Orphanet condition information
Condition-specific resource
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