New initiative to develop much needed European guidelines for the optimal treatment of PKU is announced
More than 400 participants attended the 26th ESPKU Annual Conference from 18-21 October 2012.
This annual event is a unique forum for patients, carers and healthcare professionals to drive initiatives forward together with the objective of improving the management of Phenylketonuria (PKU) across Europe.
"2012 was a significant milestone for us with the launch of the first PKU benchmark report Closing the Gaps in Care at the European Parliament in Brussels on Rare Disease Day. The first step to addressing the gaps in care was to develop a consensus paper calling for a European gold standard in screening, treatment and monitoring across Europe. This paper, calling upon health professionals to establish guidelines in the optimal care of PKU, is currently being prepared for submission to a peer-reviewed publication.
This progress could not have been achieved without the strong collaboration of all our members. This year, we will be building on that momentum through the launch of a new working group dedicated to developing guidelines for the optimal treatment of PKU," said Eric Lange, President of E.S.PKU, and Chair of the Meeting.
"We need to ensure that PKU patients get an equal chance of living a healthy and productive life, no matter where they live. We cannot accept that some people with PKU are still being left untreated in Europe. The publication of the E.S.PKU consensus paper will contribute to addressing that," added Dr Francjan J van Spronsen, chair of the Scientific Advisory Committee of the E.S.PKU. "The consensus paper asks us as professionals in PKU care to develop European or even world-wide guidelines on the treatment of PKU for every age throughout life."
You will get more information on the ESPKU consensus paper project as well as impressions from another outstanding ESPKU Annual Conference in the following film: