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0 at baseline to 16.7 at follow-up (p less then 0.001). Activity levels improved, but not significantly. This proof of concept study showed that the family-based intervention had a positive effect on impairments and self-management of disabilities, family quality of life and stigma. We recommend a large-scale efficacy trial, using a randomised controlled trial and validated measurement tools, to determine its effectiveness and long-term sustainability.Retroperitoneal fibrosis (RPF) is an uncommon condition characterized by inflammation

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