A condition is defined as rare if only 1 in 2000 people (or less) have it.
My son has a condition that occurs in less than 1 in 1000000 people, and that's why I'm writing this post.
So, rare conditions are rare - but there are so many of them, and millions of people worldwide are affected by one.
Why is it so important to raise awareness for rare conditions?
Because it can be very hard to get proper treatment, and also to get a correct diagnose in the first place.
Doctors learned that "common things are common, rare things are rare", and some of them will even dismiss the possibility of a rare condition, not take necessary actions and not refer you to a specialist - that happened to us at first! We were still lucky, got support from a selfhelp association (in our case the German association of little people and their families - BKMF) and got a diagnosis after only 1 year.
