Euro-ataxia is an international non-profit association, consisting of member organisations from across Europe, including Ataxia UK. They unite 19 patient groups, representing people with progressive ataxia from 13 different countries. Together, these groups help people with progressive ataxia lead their best life.
At the Euro-ataxia meeting in Frankfurt on 9th November 2018 a workshop was held to discuss the role of patients and patient groups in research. This was attended by Euro-ataxia member groups, academic researchers specialising in ataxia and representatives from pharma companies. The questions addressed in the workshop were: ‘What do you see is the role of patients and patient groups in clinical research?’ and ‘What are the barriers for their involvement?’ The outcome of these discussions has led to the creation of our Patient Charter, approved by the Euro-ataxia Board.
Euro-ataxia believe that all ataxia clinical studies should involve the input of people affected by ataxia. This includes patients and their parents or carers, and patient group representatives. The Patient Charter outlines their vision for this, why it is important, and proposes how it should be implemented.
View the Patient Charter on the Euro-ataxia website here.