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

Read full story

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

Read full story

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

Read full story

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

Read full story

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

Read full story


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

Read full story


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

Read full story

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

Read full story

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

Read full story
What's your story?

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!

Share your story

Share your colours

Join the community. Help us build awareness. Share your photos, videos and experiences!