History, aims and principles

An organisation created by parents, for parents and their children

The Early Days

The Association was founded in 1965 by a small group of enthusiastic parents who each had a child with spina bifida and/or hydrocephalus. A significant amount of media interest in spina bifida had been generated throughout Scotland and from this increased awareness, it became apparent that action was required.

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 very significant amount of autonomy they were ultimately accountable to the National Association's Management Committee.

SSBA Today

48 years on, the Scottish Spina Bifida Association now employ specialist staff, in their Family Support Centre, and offer a multi-facetted Family Support Service to those affected by spina bifida, hydrocephalus and allied conditions, across Scotland.

The Vision

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

Our Mission Statement

"The SSBA 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. "