Benjamin’s journey

Benjamin was about 3 months old when he had his first seizure (that we know of), he was sent to sick kids hospital in Toronto… Continue reading Benjamin’s journey

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Evie’s story

Evie was diagnosed with a very rare life threatening genetic condition called LPIN1 in April 2023 age 4 years old. Caused by both parents having… Continue reading Evie’s story

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Yeni’s Story

Hi, my name is Yeni, from Indonesia. I have rare disease called Friedreich’s Ataxia. I’m diagnosed with Friedreich’s Ataxia (FA) when I was 19 years… Continue reading Yeni’s Story

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Mighty Morgan

Morgan’s journey began innocently enough, with her parents, Darius and Laura, eagerly embracing the joys of parenthood. However, after coming home from the hospital, they… Continue reading Mighty Morgan

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My baby broke my back

I first felt pain in my back in July 2019, when my first baby was a month old. It just got worse and worse, and… Continue reading My baby broke my back

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Two of a kind

Jaxon (age 14) and Jeren (age 10) are brothers who mirror each other with genetics. Both boys have multiple gene deletions that have resulted in… Continue reading Two of a kind

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Amelia, CLN1 Batten Disease Warrior!

Our daughter, Amelia, was diagnosed with CLN1 Batten Disease (neuronal ceroid lipofuscinosis) at 2 years old. Before learning of her diagnosis, we had never heard… Continue reading Amelia, CLN1 Batten Disease Warrior!

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Non sono quello che mi è successo. Sono quello che ho scelto di essere. Carl Gustav Jung

Hai presente quando alla fine di un film giallo svelano il nome dell’assassino e tutti gli indizi sparsi ore precedenti trovano finalmente una collocazione? Ecco,… Continue reading Non sono quello che mi è successo. Sono quello che ho scelto di essere. Carl Gustav Jung

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1 heure à la fois

À l’occasion de la Journée des Maladies Rares, je souhaite partager avec vous mon parcours avec le Syndrome de Schmidt. Depuis septembre 2021, je vis… Continue reading 1 heure à la fois

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