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Our Christmas miracle

The story starts as many would – a boy and girl fall in love and welcome a new life to the world. He’s perfect…8 pounds… Continue reading Our Christmas miracle

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My journey to HLRCC

I was 24 when I first started having ‘women’s issues’ I could feel a lump in my lower abdomen and the GP diagnosed Fibroids, eventually… Continue reading My journey to HLRCC

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Gift of life.

I was born with rare genetic disorder Tyrosanemia type two. Living most of my childhood in hospital from 9 mo old til 10. I was… Continue reading Gift of life.

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Same rare disease twice

I am 33 and at age 31 I was diagnosed with a gcg in my jaw in the most unusual place ever. After surgery it… Continue reading Same rare disease twice

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Zebra stripes all the way

I am a 26 year old female born with albinism. Later in life I’ve been diagnosed with MAST cell activation disorder and as of right… Continue reading Zebra stripes all the way

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Living life with Pompe Disease

Diagnosed at 34 years old with Pompe disease, a rare progressive metabolic disease. Due to a weak diaphragm I use a ventilator at night. I… Continue reading Living life with Pompe Disease

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Desmoid Tumour/Melorheostosis

I was diagnosed with two rare diseases in 2010, the first called is a Melorheostosis is a rare and progressive disorder characterized by hyperostosis (thickening)… Continue reading Desmoid Tumour/Melorheostosis

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One Families Journey with a Rare Disease

29 February: A rare day for #RareDiseaseDay. Join us in making the voice of rare diseases heard today! http://www.rarediseaseday.org/ I’m 56 years old. My story… Continue reading One Families Journey with a Rare Disease

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De Novo Lynchie

De novo is a Latin phrase, literally translating to “from the new,” and in my case it lets my parents off the hook, thankfully it… Continue reading De Novo Lynchie

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