As the countdown to Rare Disease Day 2019 begins, the TSA is proud to announce their support for this internationally-recognised occasion and want you to get involved!
Organised by patient organisation EURORDIS, Rare Disease Day takes place on 28 February and is an important opportunity to raise awareness of rare diseases, such as TSC, and how they impact on people’s lives.
Although 1 in 20 people will live with a rare disease at some point, there is no cure for the majority of diseases classified as being rare. On Rare Disease Day, hundreds of patient organisations worldwide will work to shine a light on the need for local policy and decision makers to better assist those living with a rare disease.
This year’s Rare Disease Day theme is ‘Bridging Health and Social Care’, which aims to highlight the need to better coordinate medical, social and support services for people affected by a rare disease
You can show your support for Rare Disease Day in many different ways, from changing your profile picture on social media to hosting your own Rare Disease Day event.
Want to take that extra step for Rare Disease Day? This year, many will take to social media and share pictures of themselves in bright facepaint – send us your pictures and we will proudly put them on our social media! All you need to do is:
- Paint your face using brightly coloured face paints
- Pose for a selfie or group photo
- Post the picture on social media using the hashtags #ShowYourRare and #RareDiseaseDay