Scottish Spina Bifida Association

An organisation created by parents, for parents and their children

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. "

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

40 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.

How is SSBA Helping?

Currently the Scottish Spina Bifida Association listen and help children, adults and families with spina bifida, hydrocephalus and related conditions. Although hydrocephalus is an allied condition of spina bifida, it can also occur independently as a result of other conditions. As our Family Support Workers have an expertise in the condition we can also support individuals with hydrocephalus as a sole condition.

The main aspects of the Association's service delivery is the Family Support Service and Lo-call Helpline. Currently there are just over 3000 registered users of the Association who benefit from access to the Family Support Service often via its lo-call telephone help line. 

Scottish Family Support Centre

In 2006 the Association completed building a new Scottish Family Support Centre. This purpose built facility now accommodates the Family Support Service and has allowed the Association to expand it's services. The Centre provides a child friendly environment where a range of training, recreational and support services are available to all those affected.