Alan Thomas

Patient Leader

Alan is a patient engagement advocate for rare diseases in general and Ataxia in particular. He is known as the 'rare disease warrior' and, as a patient with a 'life-limiting' rare disease, he can convey the patient engagement message from his point of view in all issues regarding the wellbeing of patients. Alan has established a patient-driven and focused group (Charity 1184030 ) and campaigns at many levels, including patient forums, local and regional health boards, Welsh/UK government organisations, as well as taking part in many global conferences, in person or via the internet. The addition of an Ataxia awareness project with has seen interaction from over 24 countries, within its first month. with many messages of praise, for such a global campaign. Ataxia is a Greek word meaning "Lack of Order" Alans mission is to bring back some ORDER to the lack of ORDER


Patient Leader Hero Best in Show: Twitter

Past Awards Participation

Sixth Annual WEGO Health Awards


Patient Leader Hero
Alan Thomas
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