Do you suffer from a rare disease. Well let me tell you from personal experience, it can feel pretty lonely. I suffer from two rare diseases, CIDP and cystinuria. If you discount the online community do you know how many people I have met with CIDP? Easy, nada, nil, zilch, zero. Yes, a big fat doughnut! For cystinuria, the answer is one. That is my brother and genetics would have played a big part in that.
But you compare all rare diseases, there are an awful lot of them. Did you know that 350 million people suffer from a rare disease worldwide, which is about 5% of the population or 1 in 20 people. If all the people afflicted by a rare disease lived in one country, it would be the third most populated country in the world, and would have more people living there than the USA.
However, there is a group that specialise in drawing attention to and funding rare diseases. They are trying to raise awareness by getting 1 million people to like their facebook page. You could help me and 349,999,999 other people by doing so. Please forward the message on to all your friends too. The link is here:
Facebook page
You can learn more by visiting their website here:
Global Genes Project
Until next time, stay well:)
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