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HELPSAFIA.COM

Safia is 14 years old and in 2016 she started to have a lot of health problems: unexpected, frequently and constant bleeding, severe abdominal pain,… Continue reading HELPSAFIA.COM

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Its ok to be rare

I was diegnosed pretty quickly with vasculitis, and then Lupus also about a year later. My mum has Vasculitis and scleroderma so when i started… Continue reading Its ok to be rare

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Mortar that never dries – EDS-h

Imagine a brick building built with mortar that never dries. Walls move, buckle, and eventually collapse. Now imagine a complex human body with a similar… Continue reading Mortar that never dries – EDS-h

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Why I Fight

My name is Reanna and I have Chiari Malformation, Hypermobile Ehlers-Danlos Syndrome, Dysautonomia and a few other comorbities.  It has been a challenge finding doctors… Continue reading Why I Fight

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Lafora children

From the book “TACI”, by the author Snjezana Gajic, mother of a girl named Tatjana, who lost her battle of life against the Lafora disease.… Continue reading Lafora children

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Le Syndrome de Kleine-Levin, une lutte de tous les instants

Je pense que dans la vie chacun à son fardeau, ses angoisses, ses appréhensions, ses douleurs ses combats moi ; j’ai KLEIN C’est arrivé comme… Continue reading Le Syndrome de Kleine-Levin, une lutte de tous les instants

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Bella’s Story

Bella was born in 2003 and for the first few months of her life, we did not notice anything unusual, to us she was your… Continue reading Bella’s Story

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Living with CLOVES Syndrome

I was born with a rare congenital disease that baffled every doctor my parents took me to. It took until I was 14 years old… Continue reading Living with CLOVES Syndrome

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DDX3X

#WRRD2018 #DDX3X Little is understood about normal DDX3X function in the cell or how mutations within this gene can lead to cellular dysfunction and human… Continue reading DDX3X

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