Guides for families receiving rare disorder diagnoses
Starting points for caregivers on what to know and what to do next, written by professionals
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What to do next when your child has been diagnosed with a rare neurodevelopmental condition
Getting a diagnosis of a rare neurogenetic condition is a milestone that can be difficult to process. You've likely received a lot of information, and it may feel overwhelming.
Lennox-Gastaut syndrome: What to do next when your child has been diagnosed
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Cerebral palsy: What to do next when your child has been diagnosed
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FOXP1 syndrome: What to do next when your child has been diagnosed
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Dup15q syndrome: What to do next when your child has been diagnosed
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Rett syndrome: What to do next when your child has been diagnosed
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Friedreich's ataxia: What to do next when your child has been diagnosed
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Childhood Absence Epilepsy: What to do next when your child has been diagnosed
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Juvenile Absence Epilepsy: What to do next when your child has been diagnosed
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FOXG1 syndrome: What to do next when your child has been diagnosed
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Pitt-Hopkins syndrome: What to do next when your child has been diagnosed
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ReNU syndrome: What to do next when your child has been diagnosed
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SYNGAP1-related disorder: What to do next when your child has been diagnosed
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Dravet syndrome: What to do next when your child has been diagnosed
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Cri du Chat syndrome: What to do next when your child has been diagnosed
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KCNQ2-related disorders: What to do next when your child has been diagnosed
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SCN8A-related disorders: What to do next when your child has been diagnosed
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SCN2A-related disorders: What to do next when your child has been diagnosed
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Kabuki syndrome: What to do next when your child has been diagnosed
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Batten disease: What to do next when your child has been diagnosed
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