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Neuromielitis optica o enfermedad de Devic

2007: Fue muy triste estar en el hospital por un mes y que después del tratamiento no hubiera resultados, al final los médicos diagnosticaron Sidrome… Continue reading Neuromielitis optica o enfermedad de Devic

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CVID and Rare Therapy Duck

Hi my name is Ashley Scott and I wanted to share my story with you about my sweet therapy Duck, Puff The Duck. We have… Continue reading CVID and Rare Therapy Duck

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United States-PBC

I am 41 years old and was diagnosed with primary biliary cholangitis 2 years ago in April. I wasn’t sick at all or having any… Continue reading United States-PBC

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Alpha 1

Nine years ago I was diagnosed with a genetic condition called Alpha one it actually has a longer name and that it is passed on… Continue reading Alpha 1

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My life with MHE / HME/ MO & Hashimoto’s

Hey my name is Naziha and I’m diagnosed not with one but two rare diseases I have Hereditary Multiple Exostoses (known as HME, MHE or… Continue reading My life with MHE / HME/ MO & Hashimoto’s

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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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