Real Life Ataxia and Rare disease Health Stories

Here we have a collection of stories, from people sharing the patient “Adventure”. Their stories help to spread awareness and understanding of the diseases.

Ataxia Awareness Day

This is a test

The aim of this PhD study is to explore the relationship between quality of life and social support for adults living with rare genetic skin conditions.

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Ataxia Awareness Day

International Ataxia Awareness Day

International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on...

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Alan and JC

Ataxia has NO Borders

Our founder Alan Thomas (@ataxiaandme) met with John "JC" Colyer at the 9/11 memorial in New Jersey. It was a moving experience in a very emotional place.

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I am Now Ataxia Aware!

Up until two months ago I had never heard of Ataxia or other rare diseases. As a third year English Literature and Creative Writing undergrad unless it was Shakespeare, I...

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15 Years of Rare

After 15 years of living with my rare disease Immune Thrombocytopenia (ITP) I can reflect upon plenty of incidents during that time. It has certainly been eventful, to say the least....

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Darcy’s CACNA1A Story

My name is Darcy Marie. I enjoy the simple things, shopping, horseback riding, walking in the park. But today I’m going to share my story.

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