Addressing the high burden and significant unmet needs in Phenylketonuria (PKU)

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This Policy Roundtable, organised by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU), was hosted by MEPs Deirdre Clune (Ireland, EPP) and Nessa Childers (Ireland, S&D).


  • to have an informed discussion on phenylketonuria (PKU) and its impact;
  • to support understanding of the true nature of the condition;
  • to identify the unmet needs in the area of PKU;
  • to gather expert opinions on what can still be done to advance the interests of people living with PKU;
  • to generate political momentum.

Potential areas of action, arising from the meeting

  • The need to ensure new born screening across the EU (setting up and actual implementation) bearing in mind existing initiatives in this field (seeking further advice from Commission officials);
  • The need to ensure EU food labelling laws are adapted and appropriate; labels should provide clear and complete information;
  • The need to ensure appropriate HTA criteria and appropriate end points
  • More attention to the process of transition of care between childand adult care and access to services;
  • Ensure dissemination and implementation of PKU treatment guidelines (via MetabERN);
  • The possibility of a MetabERN-coordinated ´twinning’ project where advanced countries work with less advanced countries to train and learn to put appropriate measures in place e.g. newborn screening.