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My son Ross

Ross is 18. He has Langerhans Cell Histiocytosis, Hypopituitarism, Cerabella Ataxia and Epilepsy.Ross was 2 when he diagnosed with Langerhans Cell Histiocytosis, treated with chemotherapy,… Continue reading My son Ross

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Braelyn’s Cutaneous Systemic Mastocytosis

Before yesterday we were a family of four with one of our little girls who had what we thought was an allergic response to milk… Continue reading Braelyn’s Cutaneous Systemic Mastocytosis

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I battle CRPS every moment of every day.

I battle CRPS every moment of every day. Living w/ CRPS has changed every aspect of my life. Even on the worst days when it’s… Continue reading I battle CRPS every moment of every day.

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Liliana’s Legacy

~ I had hoped Liliana’s birth would be the end of the pregnancy chaos, but I had no idea it was only the beginning. During… Continue reading Liliana’s Legacy

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Emily’s journey

I want to introduce you to my daughter Emily. Emily is know 17 and battling an incurable disease. My daughter has hypermobility syndrome. She was… Continue reading Emily’s journey

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Father trying to advocate for people suffering with chronic illnesses.

My story starts back when I was around 18 years old, almost 20 years ago. Factor V Leiden – Blood Clotting Condition: At the age… Continue reading Father trying to advocate for people suffering with chronic illnesses.

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Morquio vs Me

I cant run as fast, I’m smaller and have surgeries every year. It bothers me a lot but I sing. The one thing morquio doesn’t… Continue reading Morquio vs Me

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Call me Nora

Call me Nora. I am disabled. I have many rare diseases running through my veins. Cyclic vomiting syndrome, neurofibromatosis, hyper mobility syndrome, POTS, immune deficiencies,… Continue reading Call me Nora

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Kevin and Kerry Lee’s Krusade

I have two boys well I had 3 boys with Menkes Disease, it is a X-linked disease that prohibits copper from being transported and absorbed… Continue reading Kevin and Kerry Lee’s Krusade

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