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.

The E.S.PKU makes a difference between Legal members, Associate members and Honorary members.
Legal members are national or regional organisations. Their aims must correspond to the aims of the E.S.PKU. Associate members are those organisations, which do not pay a membership fee. And Honorary members are individuals or organisations nominated by the general meeting. The E.S.PKU itself has an Executive board of four members. Next to the executive board there is also a Scientific Advisory Committee or SAC. This a group of professionals who are confronted with PKU in their daily work. They keep the E.S.PKU informed about the latest scientific developments on PKU and provide advice.

Boardmembers
President
mr. David Abeln, The Netherlands 

Vice-president
mrs. Dinah Lier, Switserland 

Secretary
mr. Tobias S. Hagedorn, Germany

Treasurer
mr. Maarten Criem, Belgium

Scientific Advisory Committee:
Chairman
dr. Francjan van Spronsen,
Paediatrician Metabolic Diseases, UMC Groningen, The Netherlands

Vice-chairman
dr. Maria Gizewski,
Paediatrician Metabolic Diseases in Poland.

Secretary
mrs. Kirsten Kiaer Ahrig
Kennedy Institute, Glostrup, Denmark

Members
Members of the ESPKU are the following countries:

1. Austria
2. Croatia
3. Czech Republik
4. Denmark
5. Estonia
6. Germany
7. Greece
8. Hungary
9. Iceland
10. Ireland
11. Italy - Associazione Prevenzione Malatie Metaboliche Congenite (APMMC) and
    Cometa A.S.M.M.E. (Associazione Studio Malattie Metaboliche Ereditarie)
12. Latvia
13. Lithuania
14. Moldova
15. Norway
16. Poland
17. Portugal
18. Romania
19. Serbia & Montenegro
20. Slovakia
21. Slovenia
22. Spain
23. Sweden
24. Switzerland
25. The Netherlands
26. Turkey
27. United Kingdom

ESPKU Bank Account
KBC bank
Burgstraat 57
9000 Gent
Belgium

IBAN number  : BE66 7360 0196 7043
BIC code         : KREDBEBB