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Living with a rare metabolic disease

Hi, I’m Melissa Quekel 23 years old and I live in the Netherlands with my fiance Bart. When I was 1 year old, I was… Continue reading Living with a rare metabolic disease

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The most important year of my life

I was 20 years old and in my final year at University, I spent 2 months with severe headaches and eye pain. It was affecting… Continue reading The most important year of my life

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Matei’s Story

Matei’s Story  Matei was born on August 5th 2018, being an extremely healthy child. He has had an exciting development period. From the newborn to… Continue reading Matei’s Story

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EDS

I wasn’t diagnosed with EDS until age 55. I spent my whole life with dislocations, subluxations and chronic pain which I was told was all… Continue reading EDS

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EDS

I wasn’t diagnosed with EDS until age 55. I spent my whole life with dislocations, subluxations and chronic pain which I was told was all… Continue reading EDS

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The Worst Day of My Life

Most high school students worry about getting good grades to make their parents happy or making friends in high school. I was not one of… Continue reading The Worst Day of My Life

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Paul’s story CTD

Sadly, since writing Paul’s story on Limbic encephalitis anti-LGI1 and neuromyotonia (UMN), we are grieving because he passed away in mid-April this year. I would… Continue reading Paul’s story CTD

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Battle Cry

April 23th, 2017.  It all started like this, or rather, it made everything worse like this … Since I was a child I have suffered… Continue reading Battle Cry

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Meet Avalon, Young Founder of The Avalon Foundation with HPP

Avalon (Avie) has a rare genetic disease, Hypophosphatasia (HPP), that is characterized by the abnormal development of bones and teeth.  Avie, who is all too… Continue reading Meet Avalon, Young Founder of The Avalon Foundation with HPP

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