Pozdravljeni, moje ime je Simon. Ozaveščanje mi predstavlja neke vrste terapije, ki mi pomaga pri premagovanju bolezni z nenavadnim imenom Marfanov sindrom. Morda bo kdo… Continue reading Ozaveščanje

Read full story


Hallo 🙂 Mein Name ist Mussa und ich bin vier Jahre alt. Ich habe das SATB2-Syndrom. Ich kann leider nicht reden und verstehe viele Sachen… Continue reading SATB2-Syndrom

Read full story

A life with chronic pancreatitis

I was diagnosed with chronic pancreatitis with EPI in 2019. I actually think I had in 2014 when it showed on a MRI, but drs… Continue reading A life with chronic pancreatitis

Read full story

Invisible disease

Finnley may look like a typical 8 year old boy, but his genetic mutation is far from typical. Ever since he was born he was… Continue reading Invisible disease

Read full story

“You’re too complicated”

I was diagnosed on my 29th birthday, this was a very late diagnosis and why things have become so severe for me. Unfortunately I suffered… Continue reading “You’re too complicated”

Read full story

Loclan the fighter

Loclan is 5 years old and has been transfusion dependent since birth. He was diagnosed with Pyruvate Kinase Deficiency around 4 months of age. His… Continue reading Loclan the fighter

Read full story

Rolling with the punches

Make time for your wellness, or your body will make time for your illness. I hope my story gives hope to others suffering and inspiration… Continue reading Rolling with the punches

Read full story

Giovanni my Warrior

Gio was born prematurely at 4lbs 15oz, he ended up needing an emergency blood transfusion and surgery at just 1 month of age to place… Continue reading Giovanni my Warrior

Read full story

I am my own Pituitary Gland

I was born with a rare birth defect called Septo-Optic Dysplasia. In order to get this diagnosis, you need to have two of three indicators;… Continue reading I am my own Pituitary Gland

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!