Welcome to the website of the E.S. PKU
ESPKU conference 2012 - block the date
Saturday, 21 January 2012 21:36
Get the latest information from the best PKU professionals in Europe! Take this chance to get to know people from other countries in Europe who suffer from PKU. Don't miss the ESPKU 2012 conference this year.
The coference will be held in the UK (Liverpool) from October 18th (arrival) until October 21st (departure date). More information on the conference soon via our website.
PKU training camp Davos
Tuesday, 17 January 2012 22:51
In February 2012 a European PKU training camp is organised in Davos. If you consider a beautiful holiday in Switzerland with all PKU facilities at hand? Read the info for this camp.
This camp is not organised by the ESPKU, but we want to inform you on the possibility. More information and planning.
ESPKU benchmark report
Saturday, 15 October 2011 21:25
The ESPKU has developed a benchmark report on the management of phenylketonuria within EU healthcare economies 'PKU: closing the gap'. The report gives a country snapshot of 5 EU countries in the management of this rare disease. With the report the ESPKU envisages to initiate discussions and actions to enable a fairer deal for all PKU pateints no matter where they live.
The survey sought insight to the following issues:
- Social impact of PKU
- Applied treatment and care
- PKU health policy agenda
The findings are based on 60-90 minutes interviews with physicians, patients, carers and representatives from healthcare authorities. All countries can make use of the interviews in order to benchmark their own country.
Download:
Interview with physicians
Interview with patients / carers
Interview with policy makers
All countries can order maximum 5 paper copies. These copies can be ordered only by the official ESPKU contact person of our member associations. This has to be done by sending an email to: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .