About us

Spina Bifida Hydrocephalus Scotland provide a lifetime commitment of dedicated support and information for all those in Scotland affected by these lifelong, complex disabilities.

An organisation created by parents; for parents and their children. Spina Bifida Hydrocephalus Scotland was founded in 1965 (then known as Scottish Spina Bifida Association) by a small group of enthusiastic parents who each had a child with spina bifida.

In order to address the needs of their children who had varying degrees of disability, it was absolutely paramount that a National Organisation should be formed to speak with one voice and to advocate for those needs from a perspective of personal knowledge and understanding. In those early days local parent groups emerged in various localities throughout Scotland and each formed their own committee which was represented on a national co-ordinating committee. As the years progressed local branches were formed and although these branches had a significant amount of autonomy they were ultimately accountable to the National Association's Management Committee.

Today

55 years on, Spina Bifida Hydrocephalus Scotland's name now truly represents our current members and reflects the type of support we offer. We employ specialist clinical and support staff who work across Scotland to provide a range of dedicated support including, workshops, respite cottage, health check clinics, helpline, groups and 1-2-1 support in homes and hospitals .

Our vision

Scotland's voice for spina bifida, hydrocephalus and related conditions

"Spina Bifida Hydrocephalus Scotland seeks to increase public awareness and understanding of individuals with spina bifida and / or hydrocephalus and allied conditions. It aims to support all those affected to identify their needs and to empower them to make informed choices and decisions."