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The Disease with many Faces

In 2013 , I was 55 and  living life to the fullest . I had 2 Grandsons and my Daughter was expecting a little girl… Continue reading The Disease with many Faces

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FPIES and Spontaneous hypothermia

This is Georgia-may. She is from Dublin, Ireland. She is 3.5 years old. Georgia-may  is diagnosed with a rare allergy condition called FPIES, even rarer… Continue reading FPIES and Spontaneous hypothermia

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Freedom to us all.

Statistics show there are around 30 million Europeans living with a rare disease. Most of them caused by genetic deficiency, some also caused by environmental… Continue reading Freedom to us all.

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Our Champ 1 Gene Mutation Community

Our daughter was diagnosed with Champ 1 Mutation January 2015, after 12 years of searching for a diagnosis. Our community of Champs seems to be… Continue reading Our Champ 1 Gene Mutation Community

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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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