For People with Friedreich's Ataxia

For People with Friedreich's Ataxia

Taking part in research as a patient is a wonderful way to bring us ever closer to finding a cure for ataxia. Below is a list of current research trials and projects that are recruiting for patients with FA.

"I would like to say that the nicotinamide trials I have been involved with have so far been encouraging and I feel proud to know that some day the quality of life of those with Ataxia may be improved" - Patrick

FA balance and gait study - a study using wearable technology to investigate the impacts of Friedreich's ataxia on balance and gait, both in the laboratory setting and in real-world settings such as the home

HANDETECT study - a remote study looking at the effects of ataxias on handwriting. Available to people with any type of ataxia

Natural history study in Friedreich's ataxia (EFACTS)

The FA app - The FA app, developed by the charity End FA, is an app which aims to connect with and empower all people with Friedreich’s ataxia (FA) worldwide. The objectives of the app are to connect people with FA with researchers running clinical and virtual research trials, to empower people with FA with useful tools for managing their life and treatment, and to educate people by sharing the latest FA news.

Friedreich's ataxia Global Patient Registry (FAGPR)

On 23 June 2020 we held a webinar describing more about the FA Global Patient Registry. You can view a recording of the webinar here: