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 www.ataxia-aware.com 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

Nominations

Patient Leader Hero Best in Show: Twitter

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

Alan Thomas

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