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Lia’s Story

Lia is a little girl with a rare genetic disease that affects her motor development. From a very young age, she has faced many challenges,… Continue reading Lia’s Story

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Men Get Breast Cancer Too!

My name is Jim. I was diagnosed w/male breast cancer in May 2013. There was no history of breast cancer in my family. I had… Continue reading Men Get Breast Cancer Too!

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My NMO story

My journey with neuromyelitis optica (NMO) began in 2018 when I faced my first attack. In an instant, my life changed dramatically as I experienced… Continue reading My NMO story

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My rare disease

Hello, my name is Nada Ajaj. I am 20 years old and from Lebanon. I have been diagnosed with Gorlin Syndrome since I was 9… Continue reading My rare disease

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Spreading love everywhere I go

I’m Lola and I have Angelman syndrome, a neurogenetic disorder that means that I have to overcome developmental delays, intellectual disabilities, sleep disorders, seizures, balance… Continue reading Spreading love everywhere I go

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Speaking up about LCPD

My name is Vanessa Sickles And I was born with legg calve perthese disease. I always had leg pain for as long as I can… Continue reading Speaking up about LCPD

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lsla journey

As rare disease day approaches I can’t help but share a few thoughts and feelings behind all that comes with being a mother of a… Continue reading lsla journey

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4 foot super hero

Meet Finnley. At 5 years old he was diagnosed with two gene mutations c.524C>A, p. Pro175His, and FOXN1 with no name to the illness that… Continue reading 4 foot super hero

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Un Raro Camino de Amor

Cuando escuché por primera vez la palabra Krabbe, no sabía ni siquiera cómo escribirlo, pero he luchado con ella desde antes de conocerla mi pequeña… Continue reading Un Raro Camino de Amor

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