#ShowYourRare for Rare Disease Day 2019!
28 February 2019 // Today is Rare Disease Day (RDD), celebrated every year on the last day of February, the “rarest” of all months.
The main objective of the RDD is to raise awareness of rare diseases, conditions that can affect 1 person in 20 at one point of their life. Even so, there is no cure for most rare diseases and many of them are not even diagnosed. That’s the reason why today IF joins forces with hundreds of organisations working on rare diseases and disabilities all over the world.
In total, there are more than 6000 rare diseases and conditions, and spina bifida and hydrocephalus (SBH) are among them. On behalf of the SBH community, we call on researchers and decision makers to better address rare diseases, asking for more research and attention on the topic.
In order to make people living with rare diseases reach their full potential, a good coordination between different care providers working on rare diseases is needed, which is also the focus of this year edition of RDD, namely “Bridging health and social care”. IF is particularly passionate about this topic, advocating for multidisciplinary care for people living with SBH, and asking for a better coordination between medical, social and support services.
Last but not least, the theme of this RDD social media campaign is ‘ Show your rare’, and it encourages people to show the world that they live with a rare disease. In order to do so, they can paint their face with bright colours and take pictures to share on social media using the hashtags #ShowYourRare and #RareDiseaseDay.
More info about the Rare Disease Day here.