Patient resources for Hereditary spherocytosis
Places to find practical help and support. Each organization sets its own services and eligibility.
Communities and additional support
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ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases)
General support · Based in the European Union
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EveryLife Foundation for Rare Diseases
General support · Based in the United States
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Genetic and Rare Diseases Information Center (GARD)
General support · Based in the United States
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National Organization for Rare Disorders (NORD)
General support · Based in the United States
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Organization for Rare Diseases India (ORDI)
General support · Based in India
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Pyruvate Kinase Deficiency International Alliance (PKDIA)
General support · Based in the United States
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Hereditary Spherocytosis (Facebook Page)
Condition-specific resource · Peer support
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Hereditary Spherocytosis Support (Facebook Group)
Condition-specific resource · Peer support
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Blood and Lymphatic Disorders — Inspire
General support · Peer support
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Rare Disease & Genetic Conditions — Inspire
General support · Peer support
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Further information
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GARD condition information
Condition-specific resource
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Orphanet condition information
Condition-specific resource
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