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WHY DON'T YOU TELL US YOUR STORY?
Share your photos, videos and your experiences! Be part of Rare Disease Day by informing others and raising awareness—sending a message of solidarity and community.

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Dustin - United States
Many people perceive one's senior year of high school to be a time in which teenagers are creating memories that will last a lifetime with friends they've had for the majority of their life; however, I was an outlier in this situation. During my senior year of high school, I was lying in a hospital bed, constrained by a feeding tube, and it was unclear if I would ever make a full recovery. The doc...
Monika - Netherlands
Hoi ik ben Monika en ben 43 jaar en alleenstaande moeder met 2 kinderen. Van af kleins af aan ben ik al vaker ziek dan de andere kinderen. En ziek zijn vond ik echt niet leuk. Ik wilde dan gewoon naar school en naar buiten zoals andere kinderen dat ook deden. Ik ben geboren met bronchithus ok daar kan je redelijk mee leven.Wel veel peniciliene en antibiotica gehad. Ook heb ik alle kinder ziektes ...
Tri - Vietnam
In Viet Nam, we totally don't know this rare disease. There is something wrong with our daughter. Just only later on we know CROUZON SYNDROME. Dung has undergone 4 major surgeries operated by foreign doctors: 1- Surgery of Fronto-orbital advancement 2- Surgery of Chiari Type 1 Malfunction Decompression 3- Surgery of Palatal plit +adenoidectomy +tonsillectmy ENT 4- Surgery of Fronto-orbita...
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