The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (or E.S.PKU) is the umbrella organisation of about 41 national and regional associations from 31 countries established by parents. Since 1987, representatives of most European countries have come together to improve the quality of life of persons afflicted. The rather short history of the E.S.PKU already shows that the quality has improved considerably. The main event of the E.S.PKU is a yearly European conference. This conference is unique, since both patients (and parents) as well as medical representatives join this meeting. The patients have their own sessions and there is a medical conference. In between the sessions there is time enough to get to know each other. Next to this conference the E.S.PKU supports the members. The organisation has its own lobby in the EU. And has good contacts on European (and worldwide) level with companies.