Useful links for parents
Information and support organisations that families often find helpful.
In South Africa
- Nelson Mandela Children's Hospital
The hospital's own site, with information for patients and families visiting the hospital. - Smile Foundation
A South African non-profit supporting children with facial and craniofacial conditions, including craniosynostosis, and their families. - Epilepsy South Africa
A national organisation offering information, advice and support for people living with epilepsy and their families. - CHOC Childhood Cancer Foundation
A South African organisation supporting children with cancer, including brain tumours, and their families.
International
- NeuroKids
A non-profit working to improve care for children with hydrocephalus and spina bifida, with training partners in South Africa and across Africa. - Hydrocephalus Clinical Research Network (HCRN)
A network of North American paediatric neurosurgery centres researching hydrocephalus; includes information for families. - Hydrocephalus Association
A US organisation with plain-language information on hydrocephalus, shunts and ETV for families. - Shine
A UK charity supporting people with spina bifida and hydrocephalus, with practical guides for parents. - Headlines Craniofacial Support
A UK charity providing information and family support for craniosynostosis and related conditions. - Great Ormond Street Hospital: conditions and treatments
Patient and family information leaflets from a UK children's hospital. - NHS: Hydrocephalus
The UK National Health Service's overview of hydrocephalus, its symptoms and treatment. - NHS: Spina bifida
The UK National Health Service's overview of spina bifida and its management.
Books for families
- Gillette Children's Healthcare Series (all books)
A series of practical guides for families on childhood physical and neurological conditions, written by clinicians with input from families. - Spina Bifida: a practical guide for families
Covers spina bifida across the lifespan, including associated hydrocephalus, Chiari malformation and tethered cord. - Craniosynostosis
A family guide to craniosynostosis, its assessment, treatment and follow-up. - Epilepsy
A family guide to childhood epilepsy, its treatment and day-to-day management.
These links are provided for general information only. External websites and publications are not endorsed or controlled by the practice, and their content is not a substitute for advice about your own child. Please discuss any questions with the team.