EuroWilson

Patients with rare disease face inequalities and some are additionally disadvantaged by poorer services and lack of empowerment. The overall aim of E-Wilson is to test the hypothesis that inequalities in the quality of assessment and care of patients with an exemplar rare disease, Wilson's disease, may be reduced by an interactive clinical database which has patient participation and which functions within a European Reference Network. The specific objectives are:

1. To sustain an interactive clinical database for Wilson's disease (WD)
2. To establish a European Reference Network for Wilson's Disease (ERN-WD) Expert Group
3. To enable and evaluate patient empowerment
4. To improve education & quality in WD: hepatology
5. To improve education & quality in WD: neurology and psychiatry