The Scientific advisory committee oversees projects like the European Guidelines and collects data[2] to support studies in the field of phenylketonuria.
Besides the political work (such as METAB-ERN[3] or EXCEMED[4]) on European level, the E.S.PKU hosts an annual conference.
By the end of the year, the complete guidelines[10] were published in the Orphanet Journal of Rare Diseases.
It was inspired by the Rare Disease Day and should increase the awareness for Phenylketonuria to get featured in news.
As both of these people had a tremendous impact on the dietary treatment for Phenylketonuria the date proved to be the best option.
To highlights certain aspects of the Phenylketonuria treatment and to raise public awareness, the E.S.PKU produces films / documentations.