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Jordan, my one in a million

Jordan, my 7 year old son was diagnosed with dfsp (dermatofibrosarcoma protuberans), a rare form of cancer. The only treatment for him was surgery. He… Continue reading Jordan, my one in a million

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Hirschsprungs Disease

My son (now nearly 10) was born with a condition called Hirschsprungs Disease which affects 1 in 5,500. The condition involves a section of bowel… Continue reading Hirschsprungs Disease

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Mt father

20anni durante una visita ai miei genitori ho subito notato he mio padre non riusciva a pronunciare bene una parola “vitamina C. Parlava male poi… Continue reading Mt father

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Hunter Syndrome (MPS)

I had never heard to Rare Disease Day before. Then last year my youngest son was diagnosed with Mucopolysaccharidosis II (Hunter Syndrome) – a progressive… Continue reading Hunter Syndrome (MPS)

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Palatal Myoclonus and Occipital Neuralgia

Mid 2011, I was pregnant with my first child, and suffered from hyperemeis Gravidirum. I was sick up to twenty times a day. About halfway… Continue reading Palatal Myoclonus and Occipital Neuralgia

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My cousin who suffer from brain damaged

My cousin, she is turning 23 years old, in 2013 she had car accident, and became brain damaged. She couldn’t talk properly and always tried… Continue reading My cousin who suffer from brain damaged

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Giving birth to a Blood Angel

When I heard my sons diagnoses with Severe Hemophilia A for the first time my world turned upside down, backwards, and twisted. I was young,… Continue reading Giving birth to a Blood Angel

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Sam Berns

Sam Berns, the teenager who aged ahead of time, died last week after battling for 17 years with an incredibly rare genetic condition. The boy… Continue reading Sam Berns

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Hope for Jackie

It began in September 2010, I was waking with my friend to the gas station. On our way back home I noticed I began getting… Continue reading Hope for Jackie

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