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Celebrating the uniqueness of being rare

Our journey began when we discovered that Madalynn had a genetic disorder at just under 2 years old, after a terrifying ICU stay due to… Continue reading Celebrating the uniqueness of being rare

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Tulang ku memang rapuh tapi cita-cita ku tidak akan rapuh

Hy nama ku Bintang El-Shanum saya berasal dari Indonesia. aku mengalami kelainan tulang sejak dalam kandungan terlihat dari mesin USG tulang panjang ku sangat pendek… Continue reading Tulang ku memang rapuh tapi cita-cita ku tidak akan rapuh

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My EM Story

I was diagnosed with Primary Erythromelalgia (EM), a rare and painful disease, in the spring of 2012. Erythromelalgia is a rare neurovascular condition that most… Continue reading My EM Story

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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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