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Introducere

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 the International Federation (IF). We understand that the term "older" is relative and this survey is therefore aimed at people who self-identify as ageing with SBH, from the age of 35 and beyond.

We know that the advancement of medical science and rapid development of technologies had a significant impact on survival and longevity of persons born with SBH. 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 this survey that will contribute to an exploratory European study on ageing with SBH.

Your participation is entirely voluntary and, apart from the general questions at the beginning, you are free to skip any question or omit any answer. We do, however, encourage you to answer as many questions as possible to provide us with as much useful information as possible.

The questionnaire will take you approximately 15-20 minutes to complete.

Your responses will be anonymous unless you want to provide your email address, so we are able to contact you with regard to the survey if needed. Your details, if shared with us, as well as the collected answers will be treated confidentially, in accordance with the European Union privacy legislation.

For more information about the survey, please contact renee.jopp@ifglobal.org
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