Patient resources for Cystinuria
Places to find practical help and support. Each organization sets its own services and eligibility.
Patient organizations and support
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International Cystinuria Foundation
Condition-specific resource
View NORD profile -
Rare Kidney Stone Consortium
General support
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Communities and additional support
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Cystinuria Support Network (CSN)
Condition-specific resource · Based in the United States
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CystinuriaUK
Condition-specific resource · Based in the United Kingdom
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NYU Cystinuria Registry / Rare Kidney Stone Consortium (RKSC)
Condition-specific resource · Based in the United States
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EUROCYS Registry / ERKNet
General support · Based in the European Union
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Kidney Research UK
General support · Based in the United Kingdom
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Metabolic Support UK
General support · Based in the United Kingdom
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International Cystinuria Foundation — Private Facebook Group
Condition-specific resource · Peer support
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Further information
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GARD condition information
Condition-specific resource
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NORD condition information
Condition-specific resource
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Orphanet condition information
Condition-specific resource
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