Vaccinations against COVID-19 and PKU

gregor.hammerschmidt Announcements

Covid-19 is a serious infectious disease which can cause severe complications, including death. It is important that we do everything we can to prevent the spread of Covid-19 and a global vaccination programme is a crucial part of this. It is imperative that everyone with PKU who can participate in the Covid-19 vaccination programme should do so. REMEMBER, COVID-19 IS NOT LIKE FLU. IT IS MORE CONTAGIOUS, MORE DEADLY, AND IS SPREADING ACROSS A WORLD WHERE NO-ONE IS IMMUNE. If you do develop Covid-19, as with other infections, it is likely to cause high blood phenylalanine levels due to the …

Treatment for adult metabolic patients is insufficient

gregor.hammerschmidt Announcements

An increasing adult PKU population requires urgent action to avert a severe treatment crisis In Europe, neonatal screening for Phenylketonuria (PKU) has been introduced over a period of 50 years between 1964 (Belgium) and 2015 (Finland). Until the early 1990s, PKU was known as a paediatric disease. Thanks to timely diagnosis and efficient treatment options, patients have a normal life expectancy. However, the treatment of adults is still neglected even in those countries with the longest screening history. Healthcare systems are not adequately prepared for increasing patient numbers. More and more adult patients lack access to age-appropriate treatment in metabolic …

European PKU Guidelines Published

gregor.hammerschmidt Announcements

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 van Spronsen stated: “Remaining within national frameworks is now outdated practice.”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 …

Introducing the “Global PKU Association”

gregor.hammerschmidt Announcements

The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) is proud to announce to be part of the foundation of the “Global PKU Association”. You will find further information, like the mission statement in the attachment. As the foundation of this new organization is still in the early phases information will be published over time. For now enjoy reading the official statement below. Global PKU announcement August 1, 2017

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Explaining PKU

gregor.hammerschmidt Partners

Everybody connected to Phenylketonuria (PKU) has been in the situation of explaining what it’s all about. The French association (Les Feux Folleits) has made a great effort to publish a video explaining PKU to children. Enjoy watching, sharing and using this video to explain Phenylketonuria to children. There is also a French version of this video available.  

Video source missing

European Phenylketonuria – PKU Guidelines

gregor.hammerschmidt Announcements, Publications

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 …