Brussels, 01/03/2012 (Agence Europe) - During Rare Diseases Day on 29 February, the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) presented a report on Phenylketonuria (PKU) to a European Parliament conference, in Brussels. This report provides an overview of policy carried out by five member states to treat this disease (the United Kingdom, the Netherlands, Poland, Spain and Sweden) and demonstrates the major differences in the different countries. In 2009, the Council of Ministers adopted a recommendation stipulating that every member state should develop a national action plan by 2013, in an effort to provide a solution to the treatment of chronic diseases. The European Commission is due to assess the progress made in this area soon. The debate at the Parliament is the first initiative planned by E.S.PKU in its programme to put PKU and other rare diseases at the top of the member states' health policy agenda, as well as to underline the lack of costs reimbursed for treating these diseases.
Esther de Lange (EPP, the Netherlands) stated: “Unfortunately, for many diseases, as for PKU, vast differences exist between European Union countries... I invite national governments to include PKU as an example in these plans, including strong guidance on high standards of screening, care and treatment.” The president of the E.S.PKU, Eric Lange, called on “European policymakers and other decision-makers to help us give our PKU patients an equal chance of living a healthy and productive life, no matter where they live”. (IL/transl.fl)