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