Transfer from Children Hospital to Adult Care in Rare Diseases

A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population. There are between 6,000 and 8,000 known rare diseases. Most of the rare chronic diseases are initially diagnosed and treated in childhood, with much of the expertise residing with Paediatricians. With improved care and survival into adulthood, transition of care from childhood to adult services is a critical and difficult time in a young person’s life.  In addition to the physical and emotional changes that are part and parcel of adolescence, growing up also involves changes in roles, relationships, expectations and status - within family, amongst friends and within the wider community of home, school and work. For many young people, leaving school or leaving home at this life-stage can mean huge changes in the environments where they live and spend their days. Of even a greater challenge is transition of young people with learning difficulties. This lecture will include age of transition, challenges, transition passport and the UK rare disease strategy and recommendations for transition.

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