In Feb 2017 I had a routine angiogram at Bedford Hospital. I have protein c deficiency (meaning my blood clots without medication) my consultant requested… Continue reading Left to Die due to lack of awareness of celiac Artery Compression Syndrome
Results for "light up for rare"
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2017!! The hardest year of my life, fighting with my own body, doctors and hospitals. That year I had gone away on holiday to Turkey,… Continue reading Losing My Younger Self
A challenge that I have been faced with is living with a rare disease called Cowden Syndrome. What this means is that I was born… Continue reading Embracing the struggles
Hello everyone! My name is Rachele, I am 23 years old from Italy. As part of the rare disease day awareness campaign, I’d like to… Continue reading Più unica che rara
We are a website dedicated to printing In order to increase awareness of rare diseases, we decided to light up the balcony of our company… Continue reading Dynamicsoft
Our mission is simple: to find a cure for Pyruvate Dehydrogenase Complex Deficiency. 1 in 41,138 children is born with PDCD; gene therapy will give… Continue reading Hope for PDCD
The Immune Deficiencies Foundation of Australia (IDFA) is Australia’s national not-for-profit and leading peak body offering education, advocacy and awareness for Australians living with primary… Continue reading Immune Deficiencies Foundation Of Australia
Cure MCOPS12 is a registered nonprofit organization dedicated to improve the lives of children and families affected by MCOPS12. MCOPS12 is an ultra-rare neurological disease… Continue reading Cure MCOPS12
My baby was born on the 6th September 2021 by emergency caesarean. We had no clue that he would be so unique, just told that… Continue reading My Unique boy