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I Am Not Alone

I am Canadian born of Irish immigrant parents so the first rare disease your mind might jump to is Hereditary Hemochromatosis and your assumption would… Continue reading I Am Not Alone

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autoimmune hepitatis and me

hi im karen im age 49years old i was first diagnosed with autoimmune hepitatis on the 7th january 2013 i was rushed into hospital and… Continue reading autoimmune hepitatis and me

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Rare Diseases Day changed My Life (APS-1)

I was diagnosed with Autoimmune Polyendocrine Syndrome-Type 1 over fifty years ago and had not met anyone with this condition until two years ago. The… Continue reading Rare Diseases Day changed My Life (APS-1)

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A Lifetime of Waiting For Answers

Today is Rare Disease Day 2017, a day intended to raise awareness for rare diseases and the need for policymakers and the public to support… Continue reading A Lifetime of Waiting For Answers

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PKU

Hi. My name is Kelly and I have phenylketonuria or PKU which is a rare disease. PKU is a genetic disorder that restricts me from… Continue reading PKU

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Allexis Siebrecht

LIFE WITH A RARE DISEASE My name is Allexis Siebrecht. I was born on October 14th, 2003 with a RARE liver disease called biliary atresia… Continue reading Allexis Siebrecht

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I fought Aplastic Anemia and won!

On October 30, 2013 I was diagnosed with Severe Aplastic Anemia, a rare disease in which there is a total failure of the bone marrow.… Continue reading I fought Aplastic Anemia and won!

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Inter cranial hypertension

My name is David. At the age of 21 I was diagnosed with IH, with papillary edema. Had to be flown to a hospital 250… Continue reading Inter cranial hypertension

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Living with Hemicrania continua

I have a condition known as Hemicrania continua, quite literally “continuous half-head pain”. My right side is affected, where I suffer a permanent background headache… Continue reading Living with Hemicrania continua

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