Independent Living Survey

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One of the themes the OI community asked us to provide more information and resources on is Independent Living.

Due to this being such a wide area covering topics from leaving home, starting a career, adapted housing, social care, benefits, travel, to finding a PA etc we developed a working group of individuals with OI to initially discuss and determine what areas we should cover as priority.

The Brittle Bone Society recognised the lack of research available around the needs for adults with OI to live independently and therefore as part of this project created a survey, which was carried out in March and April 2021.  The resulted looked at identifying the main gaps in support services for adults living in the UK and Ireland and  also assessed what resources the BBS could develop to assist individuals to live more independently.

Thanks to the Centre for Rare Conditions in Glasgow for analysing the results.

The full report can be viewed here: Independent Living Survey Report .

The Appendix to the report can be viewed here: Appendix to Report.

Below are some highlights from the responses.


The Independent Living Working Group along with Occupational Therapists have worked towards pulling useful information together. These resources will be available soon.

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