Filters

Maya: A Journey of Determination and Hope

I’m Ioana from Romania, the mother of 7-year-old Maya and this is our story. At the age of 1, we noticed a small bump in… Continue reading Maya: A Journey of Determination and Hope

Read full story

När livet blir till en kamp med Trigeminusneuralgi självmordssjukan

Jag gick i 10 år innan jag fick min diagnos. Har opererats många gånger, både mikrovaskulärdekompression, ballongvidgning, fått över 100 nervblockader. Mitt kall är att… Continue reading När livet blir till en kamp med Trigeminusneuralgi självmordssjukan

Read full story

Emily’s Journey: Living with a Rare and Complex Disease

At 26 weeks pregnant in 2014, I was advised to consider termination. My baby had abnormal tumors everywhere, and doctors had never seen anything like… Continue reading Emily’s Journey: Living with a Rare and Complex Disease

Read full story

THE FOUR HORSEMEN

Some people collect coins or stamps. I do not collect anything as normal as those things. I collect rare or superrare medical conditions. Since 2018,… Continue reading THE FOUR HORSEMEN

Read full story

RHOBTB2: How it all started

When Malia was just a few months old, I noticed something wasn’t right. At 3–5 months, she struggled to sit up without falling, her body… Continue reading RHOBTB2: How it all started

Read full story

My Journery from Rare Patient to Medical Student

From the beginning, my journey was anything but typical. My parents pushed for answers. It wasn’t until I was two years old that I received… Continue reading My Journery from Rare Patient to Medical Student

Read full story

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

Read full story

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

Read full story

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

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!