Office for Rare Conditions

Research plays a pivotal role in helping us to achieve our vision, with hospital and university staff continually striving for the advancement of children’s health.

2016 saw the opening of Scotland’s first Office for Rare Conditions in Children.

The Office is based at the Royal Hospital for Children and the University of Glasgow, and has been made possible thanks to the ongoing support of our generous and loyal fundraisers.

Several hundred children from around Scotland are treated for a rare condition at the hospital each year, and the Office works to support the health care professionals and researchers who are involved in the care of these children.

Rare conditions are chronic and often, but not always, life-threatening. While some conditions are common and affect a number of people, the vast majority will affect far fewer, sometimes a handful or even a single child in the whole of the UK.

As 75% of rare conditions are identified in childhood, it is vital to obtain as comprehensive an understanding of these conditions as possible in order to improve the treatment that patients receive, both today and in the future.

“The establishment of Scotland’s first Office for Rare Conditions in Children is a pioneering move towards the improved knowledge and treatment of a wide range of conditions, each of which has its own unique challenges.

“Through local oversight and surveillance of the treatment and management of young people suffering with challenging rare illnesses, we can take great steps towards improving the overall care that they and their families receive.” - Professor S. Faisal Ahmed, Samson Gemmell Chair of Child Health, School of Medicine, University of Glasgow.

Find out more at: