Rare Disease Day takes place on the last day of February each year. To raise awareness of rare diseases amongst the health and research professionals, policy makers and anyone who has an interest in rare diseases. Building awareness of rare diseases is vital because 1 in 20 people will live with a rare disease at some point in their life.
Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
Rare Disease Day was first launched by EURORDIS in 2008 and since then events are held each year across the world, including here in the UK. Each year promotes a different theme and campaign. This year it is centred around the theme Research and ‘Show your rare, show you care’. Use the hashtag #ShowYourRare on social media to show your support for people living with a rare disease.
You can share the poster with all your friends and family to spread the word about the this campaign and explain why awareness is vital for all rare diseases.
Go to the Rare Disease Day website to find out more and find events that are happening near you https://www.rarediseaseday.org/
On Rare Disease Day, Kerry from ASUK will be attending the Rare Disease Day event at Westminster. The second progress report from the UK Rare Diseases Policy Board on the The UK Strategy for Rare Diseases will also be launched at this event.
ASUK is part of this Board ensuring patients voice is heard at every stage of its development.You can see the full report and all updates via the website below