Tell your story!

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
19q Duplication

19q Duplication

Teri, United States, January 16, 2014

For two years our lives have been anything but normal. We fought and advocated for our child since the day she was born. After countless hours spent in doctors offices, hospitals, and therapy sessio...

My disease

My disease

Jan, Slovenia, January 15, 2014

Hello! I am Jan. I am 19 years old. I live in Slovenia (Ljubljana). I have had TPN from birth 20 hours per day. I want to get some friends from K.i.s.E.e.V. I am buying new pump at the moment. I would...



Safia, Ehlers-Danlos syndrome, Hereditary Angioedema, Brazil, February 22, 2018

Safia is 14 years old and in 2016 she started to have a lot of health problems: unexpected, frequently and constant bleeding, severe abdominal pain, Pulmonary Atelectasis, skin swelling, allergic reac...

See i look 'normal' See i look 'normal'

Its ok to be rare

Leanne, Vasculitis, United Kingdom, February 21, 2018

I was diegnosed pretty quickly with vasculitis, and then Lupus also about a year later. My mum has Vasculitis and scleroderma so when i started to loose the feeling on my left side, felt weak and tire...


Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.