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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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Gordana - Macedonia
Last year a member of the rare disease association 'Life with challenges', a mother of a child with Alport syndrome, Gordana Loleska, employed at the post office in Ohrid, began an initiative for creating a postal stamp with the Rare Disease Day logo to help in raising awareness for rare diseases in Macedonia. This initiative was supported by many medical professionals in Macedonia who sent letter...
Miss Sofia Rita Belmonte - Australia
Born as a Natural Breach Birth at the Canberra Hospital in July 1970 a Blood Transfusion and Rewiring my Eyes by 1978 I had a Massive Stroke and had to learn everything again I was again in the Canberra Hospital and Camperdown Children's Hospital Professor Bridget Wilcken and The Yale Children's Medical Hospital Where I was Diagnosed with Combined Cobalamin C Defect , Two Way S Bend Scoliosis Pedi...
Arun Khandelwal - India
Three-year-old Akshaj sounds mature for his age. But his precocity may have come at a significant cost. Akshaj is suffered from Klippel Trenaunay Syndrome (KTS), a rare genetic disorder, arguably vary between 1 or 2 in 100,000. The right side of his body, from his chest to his legs, is larger than the rest of the body. “KTS is a congenial malformation affecting the lower limbs,” said Kumud Rai, d...
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