Read this executive summary and download the full report. EP-PKU-Roundtable-11-July-2018-Final-Report
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 child and 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.