Welcome to the website of the E.S. PKU
Launch ESPKU Benchmark report at European Parliament
Sunday, 04 March 2012 10:09
On February 29th 2012 (Rare Disease Day), the European Society for Phenylketonuria and Allied Disorders (E.S.PKU) urged policy makers to bridge significant gaps in Phenylketonuria (PKUi) care across Europe during a lunch debate at the European Parliament. The E.S.PKU presented a set of recommendations based on the first PKU benchmark report “Closing the Gaps in Care”ii, launched on this occasion. The event was hosted by Members of the European Parliament (MEP) Esther de Lange and Antonyia Parvanova. See the video's of the conference:
Read more: Launch ESPKU Benchmark report at European Parliament
PKU reimbursement policy in European countries
Sunday, 15 November 2009 00:12
Many members have asked us to provide a list of reimbursement policies in the different countries in Europe. We started with creating this list in 2009. Now we are almost complete!
Click on the link to read it: reimbursement of amino acids, low protein food and Kuvan across Europe.
If your country is not listed, please send us the requested information. So that we can also include your country in the list.
Send your details to This e-mail address is being protected from spambots. You need JavaScript enabled to view it
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.
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 .