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Parry Romberg Syndrome

I’ve had Parry Romberg Syndrome since 2 or 3 years of age. PRS is a rare auto immune disorder that affects one side of the… Continue reading Parry Romberg Syndrome

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My mum’s story

Meet my mum. She has a disease called Huntingdon’s Disease (HD). Like all rare diseases, it is cruel as it gradually robs the sufferer of… Continue reading My mum’s story

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Critical Need for the Alignment of Policies

I was diagnosed with a frequently debilitating rheumatic condition Ankylosing Spondylitis (A.S.) in the UK.A prerequisite to having A.S, is that one must have a… Continue reading Critical Need for the Alignment of Policies

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Living against all odds: Gardner syndrome & FAP

I was diagnosed with a rare disease called Gardner Syndrome. This disease is a form of Familial Adenomatous Polyposis (FAP) that is characterised by multiple… Continue reading Living against all odds: Gardner syndrome & FAP

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Eight Years of Miracles

The world saw her as fragile, a child whose days seemed numbered before they had even begun. Diagnosed with Lissencephaly, doctors offered little hope. But… Continue reading Eight Years of Miracles

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Naimann pick type A

Hello friends. I am from Pakistan. Our first daughter were born in 2017 . After first month Dr diagnosed hole in heart. She passed away… Continue reading Naimann pick type A

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Twenty-Two Years of Unyielding Courage

From the moment I was diagnosed at just six months old with Glazmann’s Thrombasthenia—a rare genetic disorder affecting blood clotting—I knew my journey would be… Continue reading Twenty-Two Years of Unyielding Courage

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Ju’s Morbus Gaucher

Julia wird im Alter von 6 Jahren mit Morbus Gaucher, einer seltenen Stoffwecheselerkrankung diagnostiziert. Wie kam es dazu?Im Alter von 2 1/2 Jahren begannen sich… Continue reading Ju’s Morbus Gaucher

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The mustard seed vs ALS.

My name is Greg “Coach” Neal. I’m a very active 63-year-old male that has been diagnosed with ALS. Writing a blog is nothing I wanted… Continue reading The mustard seed vs ALS.

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