Filters

Türk Savaşçı

İsmimin hikayesiyle başlayım Emir Timur, Türk tarihinde çok büyük bir hükümdardı savaşçıydı ve bir ayağı engelliydi, İsmimi aldığım kişi gibi bende nadir bir savaşçı olarak… Continue reading Türk Savaşçı

Read full story

Surviving Tarsol Coalition My Journey Through Pain, Perseverance, and Strength

Surviving Tarsal Coalition: My Journey Through Pain, Perseverance, and StrengthFrom the outside, people often don’t see the battles I fight every single day. They don’t… Continue reading Surviving Tarsol Coalition My Journey Through Pain, Perseverance, and Strength

Read full story

22q11 and a podcaster

I was born with a congetial heart diease called tretlogy of fallout. I have had three open heart surgeies , two mouth surgeries. I was… Continue reading 22q11 and a podcaster

Read full story

Living with USP7 Hao Fountain Syndrome

As a young child born into a world at two weeks old, I was under a special light my early entrance signalled something not right.… Continue reading Living with USP7 Hao Fountain Syndrome

Read full story

The rollercoaster ride of events

I’m 27 and I have myoclonus dystonia and I was born with it but was diagnosed with it at the age of 20 in 2017… Continue reading The rollercoaster ride of events

Read full story

Addisons & EDS, More Than You Can Imagine

My name is Teresa. My journey to diagnosis was long. Too long. I couldn’t do everyday life. I had worked as a nurse, but the… Continue reading Addisons & EDS, More Than You Can Imagine

Read full story

Breathe and Believe

My name is Jay and I am 33 year old individual diagnosed at birth with an invisible disability known as Congenital Central Hypoventilation Syndrome (CCHS).… Continue reading Breathe and Believe

Read full story

Kaylee’s Krusade against IRF2BPL

Kaylee was born in 2013 perfectly healthy and full of the most amazing spirit and personality. She was a free spirit child that loved nature,… Continue reading Kaylee’s Krusade against IRF2BPL

Read full story

Living with Milroy’s Disease

I was born on October 21st 1987. To a loving mother & father. The moment I was born the doctors noticed both of my legs,… Continue reading Living with Milroy’s Disease

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!