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Rareness: the quality of being very unusual

Hi everyone, my name is Roberta and I live in Northern Italy. I have been living my life as common young girl until Christmas Day… Continue reading Rareness: the quality of being very unusual

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Illumination of Rare

Rare conditions can affect anyone, at anytime, anywhere. Geographic location, economic status, education, and gender. None of these things precludes any global citizen from being… Continue reading Illumination of Rare

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She Rejoices in Hope

My story, well where do I begin… I recall the day my life changed with an unforeseen modification that would alter my last few years… Continue reading She Rejoices in Hope

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Mi fortaleza

Hola soy Yamina tengo 32 años y una enfermedad poco frecuente llamada hemonoglubinuria paroxística nocturna con aplasia medular….me gusta ver el mar y vivir cada… Continue reading Mi fortaleza

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Mystery Solved

Born in 2009, Jackson had lots of minor health issues throughout childhood that always seemed random and unlucky but not part of a bigger picture.… Continue reading Mystery Solved

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Misdiagnosed in Rural Iowa

I was misdiagnosed with Fibromyalgia in rural SE Iowa. The medications for FM made me sicker and toxic. I had lost several organs, surgeries, hair… Continue reading Misdiagnosed in Rural Iowa

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Lipodystrophy

I was diagnosed with lipodystrophy in 2019 . Lipodystrophy is an extremely rare condition which affects 1 in 10 million people . So basically lipodystrophy… Continue reading Lipodystrophy

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Living with AcroD

Hi! My name is Frankie, I’m 7 years old and live in Sydney Australia. I was diagnosed with Acrodysostosis Type 2 when I was 9… Continue reading Living with AcroD

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Survivor of a giant cell tumour in the left femur

I’m Anne-Lise from Mauritius Island, November 2020, I went to India as I was diagnosed from a giant cell tumour in my left femur. It… Continue reading Survivor of a giant cell tumour in the left femur

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