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United States of America

In 2006 I was diagnosed with Good Pastures Syndrome and was told it is a rare autoimmune disease only 1 in a million get it,… Continue reading United States of America

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United States of America

In 2006 I was diagnosed with Good Pastures Syndrome and was told it is a rare autoimmune disease only 1 in a million get it,… Continue reading United States of America

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Ciaran

Our son, Ciaran, was born on the 28th October 2005, much wanted, and a week early by emergency cesarean. I knew the risk of Down’s… Continue reading Ciaran

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Postal stamp for children with rare diseases

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… Continue reading Postal stamp for children with rare diseases

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Combined Cobalamin C Defect the story so far!

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… Continue reading Combined Cobalamin C Defect the story so far!

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On a limb and a prayer: Living with a rare disorder

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),… Continue reading On a limb and a prayer: Living with a rare disorder

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The Years That Passed Me By…

My autoimmune problems started when I was really young having a lot of hereditary illnesses. I’ve had Reynauds for as long as I can remember.… Continue reading The Years That Passed Me By…

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My life As a Walking Taboo: Living With Malodor Disorder

I suffer from a malodor disorder called TMAU. Although I’ve been aware of my disorder for fifteen years, I’ve never spoken about it with anyone… Continue reading My life As a Walking Taboo: Living With Malodor Disorder

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It is just a vitamin

6 years ago I was a healthy hard working mom of 2 teenagers. Then one day when I was at work I realized I could… Continue reading It is just a vitamin

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