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Olga de Vries (Physiotherapist, TRS National Center for Rare Disorders Norway) is part of the international expert group for physical rehabilitation in children and adolescents with OI created by Foundation Care4BrittleBones. please see https://www.youtube.com/watch?v=epf6s3mGnk8
Journal Link: Consensus statement on physical rehabilitation in children and adolescents with osteogenesis imperfecta
The following e-book has been developed and updated by Professor Sillence and Dr Jenny Ault. It is a valuable resource for any parent or a child with OI.
OIFE had a nice informal meeting with the International Osteoporosis Foundation in Nyon, Switzerland. One of the shared interests for people with OI and the more common osteoporosis is to eat healthy. Even if it’s not a cure, it is even more important for us to eat healthy, to keep our bones as good as they can get.
Often infusion day creates a lot of anguish for both the person receiving the infusion and those around them. A couple of tips that have been passed along for making this experience traumatic include:
