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IF Survey: What does ageing with SBH mean to you?

17 June 2019

This year, improving our understanding of the lived experience of older persons with spina bifida and hydrocephalus (SBH) in Europe is a key objective for our organisation. More and more people with SBH reach 55 – the age set by the World Health Organisation (WHO) as the beginning of old age. At the same time, we know very little about transitioning to old age with SBH and its impact on physiology, mental abilities and independence.

Please help us address this knowledge gap by participating in our survey “Ageing with SBH” which will contribute to an exploratory European study on this topic. The survey is aimed at people who self-identify as ageing with SBH, from the age of 35 and beyond.

Your participation is entirely voluntary and your responses will be anonymous unless you want to provide your email address. Questions focus on areas such as health, employment, housing, mobility, relationships and sexuality, and social life. We also offer the opportunity to add additional information and/or examples of good practice for older people with SBH in your country or organisation.

Currently, the survey is available in English, Dutch/Flemish, French, German, Italian, Norwegian, Romanian, Spanish, Swedish and Turkish. We aim to make it available in additional languages. Deadline for responses is 30 September 2019.