Eli’s story

Our journey started on January 16, 2011 when our son Eli of 4 month old suddenly collapsed at home. He was taken to the ER.… Continue reading Eli’s story

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Ehsan and search for symptomatic treatment

Okur-chung neurodevelopmental syndrome is a rare disease that was diagnosed less than a year ago. She was 7 years old and was born with a… Continue reading Ehsan and search for symptomatic treatment

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An athlete with EDS and other rare diseases

I am 19 years old and a GB Team kayaker I write a blog on Facebook called Can u Kayak? That has lots of followers.… Continue reading An athlete with EDS and other rare diseases

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Delilahs Story

Delilah was diagnosed on Monday 12 November 2018 with TRIO Related Intellectual Disability. She was 6 years old. Ever since Delilah was born we knew… Continue reading Delilahs Story

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Rare is Good, Until it’s Your Disease

Rare. Like one-in-a-million rare. When you’re talking about winning a mega-lottery, one-in-a-million feels winnable. But then again, when you’re talking about a lot of millions… Continue reading Rare is Good, Until it’s Your Disease

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Cosimo

Il mio bisnipotino Cosimo (Il Grande) sta per compiere 8 anni ed ha la McCune-Albright Syndrome (MAS).   Tutto cominciò la prima volta che lo… Continue reading Cosimo

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IPF

I was diaganosed with IPF at the age 59 and had a double lung transplant on August 12, 2019 in Nashville, TN at Vanderbilt Hospital… Continue reading IPF

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Living FAPulously

My name is Christina and I am the 3rd generation people affected by FAP, yet was the 1st generation (and person) to get genetic testing, seek… Continue reading Living FAPulously

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A day dreamer girl

i was born in a strict country in which you have to be Mr/Miss Perfect or else you are not human, I don’t know why… Continue reading A day dreamer girl

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