About E.S.PKU

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 the E.S.PKU through representatives of most European countries, has co-operated to considerably improve the quality of life of those with the condition PKU and allied disorders treated as PKU.

In addition to conferences, the E.S.PKU supports the members by lobbying and advocating within the EU, raising awareness of PKU and interfaces with contacts in European and worldwide therapeutic companies.
The E.S.PKU comprises of Legal members, Associate members and Honorary members.

Legal members are representatives of national or regional organisations from member countries. Their aims align to, and reflect, the aims of the E.S.PKU and have voting rights within E.S.PKU. Associate members are those organisations that are non fee paying, with no voting rights. Honorary members are individuals or organisations nominated by the general meeting.

The E.S.PKU includes an Executive Board comprising of patients and family members. Additionally, there is also a Scientific Advisory Committee (SAC). This is made up of a group of professionals and specialists in PKU. SAC provides guidance to, and informs the E.S.PKU of the scientific developments within PKU treatment and condition management.

Members include:
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, Palestine (Gaza), Poland, Portugal, Romania, Serbia & Montenegro, Slovakia, Slovenia, Spain, Spain-Galacia, Sweden, Switzerland (French), Switzerland (German), Turkey, Ukraine, United Kingdom.