Real Life Ataxia and Rare disease Health Stories

As part of the Ataxia Aware project we are sharing personal accounts of those suffering with Ataxia or other rare conditions. We want to provide a safe space for people...

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.

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...

Hi, I’m Meg - a 31 year old with a rare disease called Spinocerebellar Ataxia – Type 1.

Blog author, Becky Smith, writes about her personal experience with Lipodystrophy.

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.

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...

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....

Son Zoyeb Mohamed Zia has Ataxia and is currently working as an Assistant Professor.

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.

My story with Poland Syndrome started the day after my son was born, when I noticed his fingers were joined together.

My name is Linda, I am 33 years old and I was born on May 23 1987, in the Park Lane Clinic Johannesburg South Africa, on my Gran’s birthday.