Rare Disease Day takes place annually on the last day of February. The purpose of the day is to draw awareness to conditions that require more attention the clue is in the name: they are rare and this means they are overlooked more easily.
So what are rare diseases, exactly? They are simply any disease affecting a small section of the population.
Most are hereditary diseases, which means a person will have the condition throughout their whole life. And although symptoms can first appear during childhood, some people aren’t aware until they’ve reached adulthood.
So why is raising awareness in February so important? The life expectancy of sufferers is reduced, and many with disabilities find discrimination can ruin their educational and social opportunities.
Rare diseases often go undiagnosed, without treatment and also without research. That’s why EURORDIS (The Voice of Rare Disease Patients in Europe) urges you to help them turn this around for good! You might be thinking, ‘But what can I do to help …?’
Well it all depends on where you live. Clicking here will take you to a list of all of the participating countries and you can find out how about events taking place in your local area.
There are loads of things you could do to help: join the Facebook group, organise a fundraising event or get the media and your local MP or MEP involved.