Patient resources for Systemic primary carnitine deficiency
Places to find practical help and support. Each organization sets its own services and eligibility.
Communities and additional support
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INFORM Network (International Network for Fatty Acid Oxidation Research and Management)
General support · Based in the United States
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NORD (National Organization for Rare Disorders)
General support · Based in the United States
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Carnitine Deficiency Syndrome – Inspire Rare Disease and Genetic Conditions
Condition-specific resource · Peer support
Visit peer community -
FOD Family Support Group Facebook Group
General support · Peer support
Visit peer community
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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