As part of Rare Disease Day, the team at Office for Rare Conditions in Glasgow highlight the work they have been doing.
The Office for Rare Conditions in Glasgow is a new project, which began in 2017. Based at the Royal Hospital for Children and the Queen Elizabeth University Hospital, the Office aims to improve the quality of life for children and adults living with rare conditions. The project is led by Professor Faisal Ahmed, Professor of Child Health at the University of Glasgow and the Royal Hospital for Children.
A rare condition is a condition that affects less than 1 in 2,000 people. There are between 6,000 and 8,000 known rare conditions and about 1 in 17 people may be affected by a rare condition at some point in their lives. This amounts to roughly 300,000 people in Scotland. Although some conditions are more common and may affect a number of people, the vast majority will affect far fewer; sometimes only a handful of people or just a single person in the whole of the UK is affected by a particular rare condition.
Rare conditions are chronic and often, but not always, life threatening. Over 75% of rare conditions first present in childhood. The Royal Hospital for Children in Glasgow is the largest children’s hospital in Scotland. Not only does it provide care for children resident within Greater Glasgow, it also treats a large number of children from the West of Scotland and, in some clinical specialties, sees children from all over Scotland. Approximately 10,000 children with rare conditions attend the hospital every year for high-level specialist care.
Patients and families with rare conditions, as well as the healthcare professionals who look after them, have several common needs. The Office for Rare Conditions has been set up in order to address these areas. The Office staff have an extensive range of experience in healthcare, clinical research and information technology. By working together with healthcare professionals, the Office for Rare Conditions aims to:
- Increase awareness of rare conditions amongst healthcare staff looking after patients who attend the Royal Hospital for Children and Queen Elizabeth University Hospital, Glasgow.
- Enhance the support available to patients and their families/carers.
- Promote standards of clinical care for affected children and adults.
- Increase the participation of people with rare conditions in multi-centre research.
- Rare conditions do not only affect the person diagnosed – they also have an impact on families, friends, carers and society as a whole. For many rare conditions, there is, as yet, no cure and several are unable to be diagnosed for many years. The small numbers of people with each condition and a lack of knowledge and expertise regarding particular conditions can lead to frustration and isolation for those affected.
The Office Patient Advisory Group has been set up in order to bring together patients, families and carers to include them in the decisions that influence the work of the Office for Rare Conditions. The group meets regularly to discuss patient and personal experiences of living with a rare condition.
Rare Disease Day 2018
Every year, the last day in February is global Rare Disease Day, a day in which people and organisations all over the world draw attention to rare conditions and their impact on patients’ lives.
The campaign seeks to raise awareness amongst the general public, as well as amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has an interest in rare conditions.
This year’s theme for Rare Disease Day is research.
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