PKU Policy Roundtable Final Report, 11 July 2018
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.
You can find the final report here.