Martes, Febrero 07, 2012
   
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Internal organisation

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.

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: Esta dirección electrónica esta protegida contra spambots. Es necesario activar Javascript para visualizarla .

 

PKU reimbursement policy in European countries

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.


amino acids, low protein food, kuvan reimbursement 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 Esta dirección electrónica esta protegida contra spambots. Es necesario activar Javascript para visualizarla