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28 February 2019

Rare Disease Day: Meet the OI team


OI Team

Today is Rare Disease Day (28 February) with people around the world joining together to raise awareness of rare diseases. As part of this year's events we are highlighting the work of one of the teams here at UH Bristol.

The osteogenesis imperfecta (OI) team at the Bristol Royal Hospital for Children, is just one of four highly specialised paediatric services in England. OI - more commonly known as brittle bone disease - affects around 5,000 individuals living in the UK. Characterised by fragile bones that break easily, presenting in many different ways and a range of severity, the condition requires medical intervention and patient support from newborn babies through to adulthood.

Dr Christine Burren (pictured, second from left with the OI team), consultant paediatric endocrinologist and service lead, said: "Bristol has been delivering treatment and surgery to affected patients since the 1980s. In 2012, NHS England selected our services as one of four highly specialised childhood services in the country to provide more intensive support to patients; including occupational therapy, psychologists, social workers, physiotherapy and specialised nurse input. "The team consists of 14 colleagues who deliver a multidisciplinary approach to patient care, so that all aspects of the condition, its physical and psychological effects, are managed. As a result, almost 100 patients from across the South West region, and a small cohort from Wales, are under our care."

Last summer, colleagues from OI services across the country, and affected individuals and their families, were welcomed to a Parliamentary Reception at Westminster. In celebration of the Brittle Bone Society's 50th anniversary, the event continued to raise awareness of the condition and the requirement for improved multidisciplinary healthcare for adult services that meet the same standard of treatment and care available to paediatric patients. In a letter from Prime Minister Theresa May, clinicians delivering OI services were thanked for their tireless contributions tackling the condition in order to make a real difference and heartfelt congratulations to those recognised through the Brittle Bone Society Excellence Awards, including Bristol Royal Hospital for Children.

"I am extremely proud of the service we are able to deliver to our patients and their families, which wouldn't be possible without the whole team who input their expertise", says Dr Burren.

"In addition to the recognition we received last summer, we are also an accredited member of the European Reference Network for Rare Bone Disease, and often collaborate with international colleagues. "We strive to make improvements to ensure patients receive the best possible care, and continue to work on a number of initiatives to ensure patient needs are catered for.

For more information about the team click here.

You can find out more about Rare Disease Day here.