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Scimitar Syndrome

I was born 8 weeks premature in March 1997. At 3 months old, I developed a chest infection and it was then where I was… Continue reading Scimitar Syndrome

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Idiopathic pulmonary hemosiderosis

Im a woman, 45 years old living in Sweden. I was diagnosed with IPH; idiopathic pulmonary hemosiderosis in june 2015. I have suffered from severe… Continue reading Idiopathic pulmonary hemosiderosis

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Tommy’s story about life with hypogammaglobulinemia

Tommy’s story about life with hypogammaglobulinemia Hello everyone, I was diagnosed with hypogammaglobulinemia seven years ago after 54 years of trying to get to the… Continue reading Tommy’s story about life with hypogammaglobulinemia

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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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