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.
Kicking SPS - Fight On !!!

Kicking SPS - Fight On !!!

Shane, Australia, January 22, 2014

I have Stiff-Person Syndrome (SPS), a rare neurological disorder affecting about one in a million people. In 2006, I discovered I had a broken back, the cause a mystery. At the same time, I suddenly w...

Starrla

Starrla

Starrla, United States, January 21, 2014

Hello my name Is Starrla, what I will do for rare disease day is advocate for people affected by a rare disease. I hope that we can get better care for all whom struggle with a rare disease. In 2011 I...

Osteopetrosis

Osteopetrosis

Paula, Portugal, January 20, 2014

I want to say more about Osteopetrose - this is the result of the genetic study of my son "Molecular study of CLCN7 gene (performed in Service Biochimie et Biologie of moléculaire, Lariboisière Hopita...

Cleft Hands

Cleft Hands

Michael, United States, January 18, 2014

My story is not a happy one..I was born on August-17-1994 The day I came into the world doctors were so interested in my Birth defect be as it's a rare one..As a child I was bullied beyoned imagining ...

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 SAFIA

HELPSAFIA.COM

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...

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(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.