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You Are Not Alone

As a young child growing up, I was super active. I’ve dealt with asthma and allergies since before I could remember so it was never… Continue reading You Are Not Alone

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Klippel Trenaunay Weber Syndrome

My name is Lucy , I’m 13 and when I was 9 I was diagnosed with Klippel Trenaunay Weber Syndrome and Hemihyperplasia , this means… Continue reading Klippel Trenaunay Weber Syndrome

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Scars of MHE

One thing I can vividly remember through the brain fog is looking at my legs in the mirror before my first surgery. I was born… Continue reading Scars of MHE

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Langerhans cell histiocytosis

In 2014 I saw a Doctor with a small lump on the side of my neck, had an ultrasound. She rang and said I had… Continue reading Langerhans cell histiocytosis

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Finding my Stripes

Hello fellow rare disease fighters! I was diagnosed with Ehlers Danlos syndrome at 17 in 2011. After having 5 unnecessary surgeries we finally got a… Continue reading Finding my Stripes

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Singing throughout the Pain

I am a retired recitalist/ music teacher/performing artist/educator and composer living in Arizona.With several rare autoimmune (IgG, IMg, D3 and B12 deficiencies) and 3 lymphatic… Continue reading Singing throughout the Pain

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Superman Elliot’s fight against NonKetotic Hyperglycinemia (NKH)

Our son ELLIOT was diagnosed with a very rare metabollic disease NKH Non ketotic Hyperglycinemia (glycine) There are 500 children in the world who have… Continue reading Superman Elliot’s fight against NonKetotic Hyperglycinemia (NKH)

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Life of Liam one day find a Cure

My SOn Liam is 16 was finally dianosed at 14 with CHOPS syndrome. He was the first three in the world dianosed thur Childrens Hospital… Continue reading Life of Liam one day find a Cure

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Always look forward to achieving goals in life.

My name is Andrew. I live in Perth Western Australia I am 25 years old I was born with three Brain Malformations, one is Periventricular… Continue reading Always look forward to achieving goals in life.

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