Approximately 10,000 children with rare or undiagnosed conditions attend the Royal Hospital for Children in Glasgow each year.
The Office for Rare Conditions, based at the Children's Hospital and the Queen Elizabeth University Hospital in Glasgow, aims to raise awareness of rare conditions, enhance the quality of care provided and promote participation in multi-centre research.
The Office for Rare Conditions wants to assist with the development of a strong network of patient support organisations for people living with rare conditions.
Arlene Smyth is the patient representative on our Steering Committee. If you would like to discuss patient-related concerns or share your experience, please get in touch.