Today is the twelfth international Rare Disease Day coordinated by EURORDIS. This year’s theme is ‘Bridging health and social care’.
“According to the first ever Europe-wide survey on juggling care and daily life with a rare disease carried out by Rare Barometer, 8 in 10 patients have difficulties completing basic daily tasks.
Communication between different services needs to improve so that services are delivered efficiently to meet patients’ best interests.”
Bridge the gaps
Managing care-related tasks alongside daily activities such as work and school can be challenging.
Therefore, the twelfth Rare Disease Day’s mission is to bridge the gaps between medical, social and support services.
Another important aspect of Rare Disease Day is to raise awareness of rare diseases and tear down stigma.
You can take part in the media campaign by paiting your face with colours and share your selfie on social media using the hashtag #ShowYourRare.
You can also add the Rare Disease Day facebook frame to your profile picture.
The first Rare Disease Day was organized in 2008. Since then thousands of awareness-raising campaigns have taken place throughout the world.
This year is no exception. Today, 460 events will take place in 95 countries!