Living with two rare diseases

Penelope was born in June 2014 and after a very rocky start (needing ECMO treatment to save her life) we soon learnt that she had… Continue reading Living with two rare diseases

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In my early 40’s I started having quite a lot of odd symptoms like vertigo, headaches, falling and generally not feeling well. I went to… Continue reading CADASIL

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MPS II – Hunter Syndrome

My son was diagnosed with Mucopolysaccharidosis II (Hunter Syndrome) at the age of 6 – a progressive, incurable, life-limiting condition. Thank you for all the… Continue reading MPS II – Hunter Syndrome

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Fighting with c3 glomerulonephritis

Hi everyone! My name is Esther and i am diagonsed with C3 glomerulonephritis after i gave birth in 2013 to my first son. My blood… Continue reading Fighting with c3 glomerulonephritis

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Noel’s Prader-Willi Diagnosis.

When I found out I was expecting my 2nd baby in March 2013 after some trouble conceiving, I was excited. First 16 weeks I had… Continue reading Noel’s Prader-Willi Diagnosis.

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Our lives were permanently changed the day that Megan Summer McSween was born. Pregnancy with Megan wasn’t easy and we knew that life after her… Continue reading MegaStar

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Erythropoietic Protoporphyria

Living with this rare disease makes life outdoors very painful. It is like being allergic to the sunlight, which causes wounds and severe pain upon… Continue reading Erythropoietic Protoporphyria

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elhers danlos syndrome

My daughter has eds (elhers danlos syndrome) was diagnosed about 1 year ago no family history she seems to have more and more things wrong… Continue reading elhers danlos syndrome

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Osteogenesis Imperfecta

I’m 15 years old & I fight a genetic bone disease called Osteogenesis Impefecta. It means my bones break easily, sometimes with no apparent cause.… Continue reading Osteogenesis Imperfecta

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