Osteogenesis Imperfecta (OI) is a genetic bone disorder characterised by fragile bones that break easily. It is also known as brittle bone disease. A person is born with this disorder and is affected throughout their lifetime.
The OI Service at Great Ormond Street Hospital (GOSH) is a multidisciplinary team that offers specialist advice, on-going management, and support for children and families, where there is a diagnosis of OI. The service is one of four highly specialised services in England for children with OI.
This year invited by China-Dolls Centre for Rare Disorders, the largest China’s non-profit association supporting children and adults with OI, the GOSH’s OI team took part in a virtual event on 6th May (Wishbone Day), the international awareness-raising day for OI. Cumulatively over 1,500 participants watched this virtual event and the GOSH team received positive feedback from the organiser, family audience and Chinese local clinical participants.
Clinicians from GOSH’s OI multidisciplinary service presented as a team and introduced the history, team structure, and service content of the paediatric service. The team also explained how GOSH manages OI patients under a multidisciplinary approach. Sharing real cases, the speakers highlighted how physiotherapists and occupational therapists help children with OI improve their life quality. At GOSH clinical nurse specialists also play a leading role in coordinating among families, consultants, and local hospitals. The team also shared two OI-related research projects, which give families with rare bone diseases hope for the future.
The purpose of the event was not merely to disseminate knowledge of rare bone diseases to the public, but also to create an international communication platform to popularise the latest treatment progress of rare bone diseases.
Mr Rongjia Sun, the event lead of China-Dolls Centre for Rare Disorders, said: “It was our great honour to have the GOSH OI multidisciplinary team be part of the Wishbone Day’s event this year. The special purpose for our event in 2021 was to launch the First Rare Bone Disease Awareness Month in China, so we really appreciate Dr Catherine DeVile and her team kindly sharing their expertise and multidisciplinary experience with OI communities in China. We hope that we can continue to learn from GOSH, develop more collaboration between GOSH and Chinese hospitals, and together help more people with rare bone diseases.”
Massive thanks go to Dr Catherine DeVile, Dr Jeremy Allgrove, Dr Belinda Crowe, Mark Heathfield, Alex Bultitude, Danielle Bastick and everyone who helped to facilitate this event.