A rare condition is one that affects 5 people or less in 10,000.
In Scotland, 1 in 17 people may be affected by a rare condition at some point in their lifetime, that’s 424,000 people in a population of 5 million.
If a condition has low prevalence it means only small numbers of people in Scotland are affected. In Glasgow, the Office for Rare Conditions, which is supported by the Glasgow Children’s Hospital Charity, the University of Glasgow and Greater Glasgow & Clyde NHS Board works with patients and families affected by rare, low prevalence and undiagnosed conditions and the healthcare professionals who work with them.
Have you completed our Patient Reported Experience Measures Survey?
If you or your child has a rare or undiagnosed condition and attends a hospital in the West of Scotland then we want to hear from you! Click here for more info and to complete the survey.
Missed our latest webinar? No problem- watch it here: The Future of Newborn Screening
Check out our new ‘Know Your Ologists’ resource!
Missed our Rare Disease Day webinar? No problem! Watch the recording here!