Well we’ve come to the end of February again. I can’t believe how quick it seems to have come around… it only seemed like Christmas 5 minutes ago. With the end of February comes Rare Disease Day and every year it gets bigger and bigger, which, of course is what we want. If you’ve not heard of Rare Disease Day before, then keep on reading to find out.
Happy Rare Disease Day
Rare Disease Day is celebrated on the last day if February, and this year’s theme is about research. The day is all about raising awareness about rare diseases and the impact of living with one. A lot of people get confused about what a rare disease actually is, but it’s defined as being a condition/disease/disorder that only affects about 1 in 2000 people. However, for my American followers, in the USA a rare disease is classed as so when it affects less than 200,000 people at any one time.
Why the difference? Well I’m sure it’s probably something to do with the fact that America is about 10 times larger then the EU and so there is a bigger population. That’s a guess mind, so don’t go quoting me now!
The big confusion about rare diseases comes around from invisible, chronic illnesses. An invisible illness, especially one that isn’t genetic (or noticeably so) can be very hard to diagnose and, therefore, a lot of people make the assumption that they are rare. Some are, some aren’t. In actual fact, most times, it’s just a case that they are rarely diagnosed, rather than the fact that they are rare diseases. For a full list of rare diseases, you can find a list here.
Over 90 countries participate in Rare Disease Day and there are so many events going on worldwide. Check out events near you and help raise awareness! Unfortunately, I’m stuck in uni all day today so I won’t be able to do my bit, so if someone could do it on my behalf – I would be very grateful!
For more information on Rare Disease Day, here are a few websites to check out:
Rare Disease Day – the official website for Rare Disease Day. You can find events near you, information packs to download and, of course, more information on rare diseases and the day itself.
NORD (National Organization for Rare Disorders)
Wishing you all a fantastic day and, don’t forget, I have another special post coming out – including my big announcement. Watch out for it!
Living with JHS 
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