A few years back E.S.PKU has conducted interviews and gathered data in 5 countries in order to compare how PKU is treated.
Results showed that the treatment is vastly different throught Europe. This was the starting point for future efforts of E.S.PKU.
Results showed that the treatment is vastly different throught Europe. This was the starting point for future efforts of E.S.PKU.
European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria wrote:
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:
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.
- Social impact of PKU
- Applied treatment and care
- PKU health policy agenda
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Maria -
is there any more detailed data on PKU care in France? is there a specific PKU association there (as I see they are not really a part of ESPKU according to the ESPKU website member data)