Who We Are?

Non-Profit umbrella organization representing european countries

We are representing
oranizations in Europe

The E.S.PKU Story

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.

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.


mr. Eric Lange, United Kingdom

mr. Gregor Hammerschmidt, Austria

mr. Tobias S. Hagedorn, Germany

mr. Stian Skarelven, Norway

mr. Duncan Noble-Nesbitt, United Kingdom

mrs. Małgorzata Henek, Poland

mrs. Agata Bąk, Spain

Scientific Advisory Committee

prof. dr. Francjan J van Spronsen, MD, PhD
Paediatrician Metabolic Diseases, UMC Groningen, Netherlands

prof. dr. Maria Gizewski, MD, PhD
Paediatrician Metabolic Diseases, Pomeranian Medical University, Poland

mrs. Kirsten Kiaer Ahring, RD, PhD
Dietician, Kennedy Institute, Glostrup, Denmark

prof. dr. Anita MacDonald, RD, PhD
Dietician, Birmingham Children's Hospital

Our Member Countries

Austria, Belarus, Belgium, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, France, Georgia, Germany, Greece, Hungary, Iceland, Ireland, Israel, Italy – ASMME, Italy – APMMC, Latvia, Lithuania, Macedonia, Moldova, Norway, Palastine (Gaza), Poland, Portugal, Romania, Serbia & Montenegro, Slovakia, Slovenia, Spain, Spain-Galacia, Sweden, Switzerland (French), Switzerland (German), Turkey, Ukraine, United Kingdom

E.S.PKU Statutes

Download the E.S.PKU Statutes

Our Account

KBC bank
Burgstraat 57
9000 Gent

IBAN number: BE66 7360 0196 7043

Contact E.S.PKU

Please use the contact form

Member Map

E.S.PKU Members Placeholder
E.S.PKU Members