E.S.PKU & PKUBoard present: PKU Travel Network

In the past E.S.PKU has been approached to set up a travel network for PKU patients. In order to achieve this goal we have partnered with PKUBoard1, an online messaging board. There are two reasons why E.S.PKU has decided to work together with PKUBoard on this matter: The E.S.PKU website is an information page and does not allow member registration Besides the conference E.S.PKU does not interact with patients directly, but offers an umbrella organization to it’s members (local organizations) The travel network has been introduced at the annual E.S.PKU Conference 2015 at the patients session. Here you can get the idea in …

Travelling to the E.S.PKU Conference 2015

Dear participants of the 2015 E.S.PKU Annual Conference, In a few days we will meet to one of the biggest PKU Events of the year, the ESPKU Annual Conference 2015 in Berlin. To make your travel as convenient as possible, please find attached some information about how to get to the conference hotel from the Station Schönefeld-Airport or from the airport itself. Those who are accommodated in the InterCityHotel Berlin-Brandenburg Airport, here is the address: Am Seegraben 2, 12529 Berlin-Schönefeld, Tel.: +49 30 756 5751-0 This hotel is located directly opposite to the airport Berlin-Schönefeld. If you arrive at Schönefeld station, …

Review of EU legislation on dietary food

Review of EU legislation on dietary food could mean a significant backward step for the treatment and management of Phenylketonuria (PKU) On March 28th, 2105 the Spring Meeting of the European Society for Phenylketonuria and Allied Disorders took place in Berlin, Germany. 24 delegates from 13 national PKU Associations took part and discussed the latest political developments. PKU patients have to follow a strict low protein diet supplemented by an amino acid replacement. They have to calculate the intake of Phenylalanine to avoid any health problems related to the disease. Therefore quantitative labelling of Phenylalanine is crucial for their daily …