What is a faithful friend? Who have they been in your life? Join me over at Global Genes where I’m sharing about one of my faithful friends.
Tags » Rare Disease
When I am thinking about what I can write for other people to read, I often have a fearful realisation. I realise that much of what I have written, recorded and scratched into journals over these last 16 years in particular is very personal, quite full of physical pain and holds many many questions about what life is about. 1,283 more words
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“Everything I know about my condition is due to my own research on the internet. I am unaware how much of this is correct or what I’m missing.” – Patient, Morquio syndrome.
Rare Disease Day®: February 29th, 2016
Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. 164 more words