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Scared Stiff – The Story of a Hyperekplexia sufferer

I am 34 years old and was born with a rare neurological movement disorder called Hyperekplexia. I suffer with the genetic form, and my father… Continue reading Scared Stiff – The Story of a Hyperekplexia sufferer

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The Third Time’s a Charm (NOT)

I am the unfortunate woman who has not one, not two but three rare diseases: fibromuscular dysplasia (FMD), mitochondrial disease and spontaneous arterial dissections. On… Continue reading The Third Time’s a Charm (NOT)

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Living with Carcinoid Cancer

The doctors diagnosed me with CARCINOID CANCER on April 22, 2016. I was informed that it was stage IV. I am a living testimony of… Continue reading Living with Carcinoid Cancer

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Seri’s Fight

It is hard to know where to begin on Seri’s story. Seri is 16 and instead of school, driving, and friends she is dealing with… Continue reading Seri’s Fight

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autoimmune hepatitis,

I’m always trying to help people understand Chloe’s disease and the hell we been thought and are still going thought!!! Around when Chloe was 2… Continue reading autoimmune hepatitis,

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Itching to meet Aiden – Cholestasis of Pregnancy

It was around 34 weeks when I started having my little itch. At first I didn’t think anything of it, and played it off as… Continue reading Itching to meet Aiden – Cholestasis of Pregnancy

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A Kleefstra Syndrome angel

Dear fellow rare-disease travelers, I would like to tell you my experience about Kleefstra syndrome. My name is Katerina and I was the aunt of… Continue reading A Kleefstra Syndrome angel

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Fighting four autoimmune diseases

I was diagnosed with Crohns Disease and Ulcerative Colitis in 1995. Then I was diagnosed with Primary Sclerosing Cholangitis in 2008. I was di

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still undiagnosed and living with the unknown

I’m 19 years old and I have seizures, falls and involuntary jerks. I have no warning I just blackout. I have been on medications which… Continue reading still undiagnosed and living with the unknown

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