E.S.PKU is very happy to announce the launch of the “Sheila Jones Award”. It’s the first time there is a patient advocate award in the field of PKU and it will be presented at this years annual E.S.PKU conference. If you are interested to learn more about the award and how to submit your entry follow this link: Sheila Jones Award Watch this video for a brief introduction to the award:
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.
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 …
