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Guides for families receiving rare disorder diagnoses

Starting points for caregivers on what to know and what to do next, written by professionals

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

Cerebral palsy: What to do next when your child has been diagnosed

FOXP1 syndrome: What to do next when your child has been diagnosed

Dup15q syndrome: What to do next when your child has been diagnosed

Rett syndrome: What to do next when your child has been diagnosed

Friedreich's ataxia: What to do next when your child has been diagnosed

Childhood Absence Epilepsy: What to do next when your child has been diagnosed

Juvenile Absence Epilepsy: What to do next when your child has been diagnosed

FOXG1 syndrome: What to do next when your child has been diagnosed

Pitt-Hopkins syndrome: What to do next when your child has been diagnosed

ReNU syndrome: What to do next when your child has been diagnosed

SYNGAP1-related disorder: What to do next when your child has been diagnosed

Dravet syndrome: What to do next when your child has been diagnosed

Cri du Chat syndrome: What to do next when your child has been diagnosed

KCNQ2-related disorders: What to do next when your child has been diagnosed

SCN8A-related disorders: What to do next when your child has been diagnosed

SCN2A-related disorders: What to do next when your child has been diagnosed

Kabuki syndrome: What to do next when your child has been diagnosed

Batten disease: What to do next when your child has been diagnosed

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