Although rare conditions are individually rare they are collectively common, affecting 3.5 million people in the UK.
This means that millions of people living with different rare conditions are experiencing the same difficulties. Delivering timely diagnosis, better coordinated care, more awareness among health professionals, and improved access to treatment and care – the ambitions set out in the UK Rare Disease Framework – could improve the lives of millions.
Statistics are simple and memorable. For Rare Disease Day 2024, our campaign has focused on raising awareness of statistics among the public and healthcare professionals, and sharing some of the stories behind the statistics.
However, for this year’s Rare Disease Day policy report we’re turning this approach on its head and exploring the statistics behind the stories. As Rebecca Middleton, CEO and Founder of Hereditary Brain Aneurysm Support says: ‘It’s often said in the rare disease world that if you can’t be counted, then you don’t count. And of course, counting data is counting people. Each data point has a person and a powerful story behind it.’
Stats behind the stories
Our Rare Disease Day 2024 Report | The Stats Behind the Stories
We know surprisingly little about the 3.5 million people in the UK who are estimated to be affected by rare conditions. Which conditions affect them? What is the prevalence of these conditions? What causes these conditions? What services and treatments are available for people living with these conditions now, and how can we build on and improve the care that they receive in future?
Our report argues that we need to segment and better understand UK data about who has rare conditions, and which rare conditions they have, so that the NHS can provide the right services and support. As Rebecca rightly says: ‘Our community counts. It’s time we were counted.’