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Miles of Resilience

Hi! My name is Miles and aside from being ridiculously cute, I also am really funny (though most of the time I don’t even realize… Continue reading Miles of Resilience

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Rare genetic disorder

My son was born June 3rd 2015. During my pregnancy everything was fine, every ultrasound was perfect I even was shown images of him in… Continue reading Rare genetic disorder

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Not only skin deep

I was diagnosed with a glucagonoma after an intense period of investigations at a non-specialist rural county hospital in the UK in September 2014. I had… Continue reading Not only skin deep

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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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