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Face of Liver Disease

I am Natalia Rose. I am 5 months old. I wa born pretty jaundice. However my first pediatrician said it was newborn jaundice and that… Continue reading Face of Liver Disease

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Why I’m Not A Hero

Why I’m Not a Hero   From what I’ve read, it seems the biggest thing people take away from their rare disease, is the new… Continue reading Why I’m Not A Hero

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A rare family in Italy

My name is Federica and I live in Italy with my husband and our 2 children, 10 and 8 years old, respectively. Our children have… Continue reading A rare family in Italy

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Luck

I guess you can say I’ve been through heck the past 19 months. So 19 months ago I was a regular 21 year old married… Continue reading Luck

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The Nathan Asher Foundation – A Symbol of Hope

November 18, 2017 is a day to be remembered as the twelfth floor of the Radisson Hotel in Port of Spain, Trinidad came alive; it… Continue reading The Nathan Asher Foundation – A Symbol of Hope

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My rare family

We knew from 26 weeks of pregnancy that our son Rowan would be poorly but we didn’t realise just how much. He was born by… Continue reading My rare family

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Living with MED

Hi  My name is Andy , I was born with a genetic condition called multiple epiphyseal dysplasia which primarily effects the hips. I’m 52yrs old… Continue reading Living with MED

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Zara Beau is a true angel

Zahra Beau Naqvi was born in 2011, she was a beautifully peaceful baby girl with deep soulful black eyes, rich red lips and porcelain white skin. This beautiful baby,… Continue reading Zara Beau is a true angel

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1 χρονο με τη νόσο Harada

Με λένε Σοφία, είμαι 23 χρονών και πριν περίπου 1 χρόνο διεγνώστηκα με τη νόσο Harada, ένα αυτοάνοσο πολυσυστηματικό σύνδρομο που σε εμένα ευτυχώς προσέβαλλε… Continue reading 1 χρονο με τη νόσο Harada

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