Since 2008, the 28th of February is Rare Disease Day, an initiative of EURORDIS and the Council of National Alliances.
The Day will see members of the rare disease community from patients and their families, to researchers and policy makers join together to raise awareness for rare diseases all over the world.
A spotlight on care
There are over 6000 rare diseases currently known with many out there still undiagnosed. Better coordinated health and social care help the more than 300 million people living with a rare disease and their families to face everyday challenges. That is why this year’s theme for Rare Disease Day is ‘Bridging health and social care’.
By focusing on bridging the gap between health and social care, Rare Disease Day 2019 is an opportunity to call for the improved and continuous coordination of all health, social and community care services to ensure these services are effective, accessible and serve the best interest of rare disease patients worldwide.
“Show Your Rare”
The social network campaign “Show your rare, show you care!“ is already underway. Anyone can participate throughout the month of February simply by painting his or her face, taking a self-portrait (“selfie”) and sharing it on social media including the hashtags #ShowYourRare and #RareDiseaseDay.
There are also other ways to participate in the campaign to support patients with rare diseases and their families.
The office of Eurordis in Barcelona, resident institution in the Sant Pau Art Nouveau Site, is also collaborating with the Plataforma de Malalties Minoritàries to commemorate this day in Catalonia, using the catchphrase “Let’s work together, let’s research”.