European PKU Guidelines Published

With their benchmark report in 2012, the European patient organization E.S.PKU has identified significant inconsistencies in PKU treatment and access to care in Europe, and called for uniform guidelines. Coordinated by the Chairman of the Scientific Advisory Committee of the E.S.PKU, since then a group of renowned metabolic experts independently developed 70 statements based on available evidence and taking into account nearly 500 scientific publications. Prof. van Spronsen stated: “Remaining within national frameworks is now outdated practice.” At the beginning of 2017 the ten key statements of the European guidelines were already published in Lancet Diabetes, Endocrinology and Metabolism. With …

Q & A

Questions & Answers for the European Guidelines?

As you have learned in our last news there has been a first publication on the European Guidelines. As you have been reading this first publication we believe that there are some questions that might have come up. This is why we have put together the first Questions & Answers for the European Guidelines. We want to give you the opportunity to submit questions to us. The most popular questions will be answered by the experts responsible for writing the guidelines. Please submit your questions until March 3rd. We will be working on answering your questions later in March. So keep an eye on …

European Guidelines for Phenylketonuria Published

The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) is very happy to announce that the European Guidelines for Phenylketonuria have been published in The Lancet Diabetes & Endocrinology. Getting to this point has taken many years of preparation. First in the line was the publication of Closing Gaps in Care. This showed the great need for European Guidelines. Treatment for Phenylketonuria is very different in Europe although it’s always the same disease. After the publication of Closing Gaps in Care the delegates of the E.S.PKU published the Consensus Paper in Orphanet Journal of Rare Diseases. This voices the patients need …

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European Phenylketonuria – PKU Guidelines

The European Guidelines for Phenylketonuria is one of the latest projects funded by E.S.PKU. The project was started after the publication of the consensus paper, written by delegates of E.S.PKU, showing the needs and wishes for guidelines. Under the lead of Professor Francjan J. van Spronsen and E.S.PKU SAC (scientific advisory committee) those independent PKU guidelines have been developed, with the help of about 20 professionals, experts in PKU, over the past three years. At the annual E.S.PKU conference 2015 in Berlin, Germany- excerpts from these guidelines were presented to the professionals as well as parents/patients. One of the main aims of the Guidelines is that they …