Resource lists
Craniosynostosis
Twelve trusted resources: leading medical centers, advocacy groups and educational sites covering diagnosis, surgery, recovery and long-term care.
12 resourcesChiari Malformation
Twelve organizations offering education, support, advocacy and research for children and families affected by Chiari malformation and syringomyelia.
12 resourcesEpilepsy
Twelve resources for education, treatment information, community support and advocacy, including seizure first aid and a 24/7 helpline.
12 resourcesVP Shunts
Twelve plain-language guides to ventriculoperitoneal shunts: how they work, surgery, care, complications and living with hydrocephalus.
12 resourcesChildren's Hospitals
Twelve children's hospitals renowned for craniofacial and craniosynostosis care, from CHOP and Boston Children's to Mott and Nicklaus.
12 hospitalsSchools
Private schools across the U.S. built for students with disabilities, offering individualized instruction, therapy services and inclusive environments.
11 schoolsDisability Organizations
Twelve respected national organizations serving children with disabilities, from early intervention to advocacy, inclusion and free medical care.
12 organizationsHelp Groups
Twenty family-led and grassroots groups founded by people with lived experience, offering peer support, advocacy and community.
20 groupsPlanning for the long term
Alex’s family is now working through what every parent of a child with complex needs eventually faces: planning for the day they can no longer provide care. We are writing a plain-language family guide on special needs trusts, benefits and long-term strategies. Read about the Guide to Securing the Future and ask to be notified when it is ready.
A note on what these lists are
The Alexander Foundation has found these sites helpful in our own research. They are a knowledge base and a starting point, not an endorsement and not medical advice. We publish information without bias, including both positive and negative reports, and we trust families to decide what is useful for them.
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