The Office carries out many varied activities to contribute to the overall aim of improving the quality of life for all people living with rare conditions. Below are some examples of the type of work we are involved in:
Meeting and talking with children, young people, parents and carers about their everyday experiences of living with a rare condition, signposting to clinical services and support organisations.
Working with health care professionals in the Royal Hospital for Children and Queen Elizabeth University Hospital to organise training events, patient and family support meetings and develop patient and education resources.
Liaising and networking with patient support organisations, encouraging their participation in patient related activities.
Promoting research, staying up to date with the latest clinical trials and providing information on what is new.
Assisting clinical services with the development of databases for children and young people with rare conditions.
Representing the patients, families and clinicians from the Royal Hospital for Children and Queen Elizabeth University Hospital on groups which meet to discuss the implementation of legislation for people with rare conditions and access to new medicines for rare conditions.