E.S.PKU Conference 2014

First Information

The 2014 Conference will be held on October 23rd (arrival date) to October 26th (departure date) at the Westin Hotel, Zagreb, Croatia (see also http://www.hotelwestinzagreb.com/). Plenary sessions will be Friday 24th and Saturday 25th October. Further details and registration will be announced in due course.

Requirements for a minimum standard of care for phenylketonuria

The E.S.PKU are proud to announce that its paper "Requirements for a minimum standard of care for phenylketonuria: the patients’ perspective" has now been published in the Orphanet Journal of Rare Diseases.  You can read the full article online: http://www.ojrd.com/content/8/1/191

Please feel free to share the link to the article!

See also the E.S.PKU press release online: http://www.prnewswire.co.uk/news/e.s.pku
Or download the full press release in different languages:


Check out youtube for a film impression of the ESPKU meeting 2012

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:


ESPKU benchmark report

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.

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 email address is being protected from spambots. You need JavaScript enabled to view it. .

PKU reimbursement policy in European countries