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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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Starrla - United States
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 had two MRI one of the brain and one of my lower back the head MRI showed white matter disease and reference some think with my certiorari of 2,3,4. And the lower back referenced a tethered spinal co...
Paula - Portugal
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 Hopital, Paris, France) identified the variant unclassified c.1798-14C> A in homozygosity in intron 19 of the gene. This sequence variation is not described in the literature, however, its analysis by predi...
Michael - United States
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 And as a result my childhood was taken frome me,i sometimes wish I was born Normal no one deserves the kind of treatment I went through..I'm 19 now And I am deep down inside ashamed of my hands..they ...
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