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Parliamentary questions
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11 April 2019
Question for written answer E-001796-19
to the Commission
Rule 130
Kateřina Konečná (GUE/NGL)

 Subject:  The need for an EU body to ensure the implementation of guidelines for treating rare disorders
 Answer in writing 

In recent years, European care and treatment guidelines have been developed in a number of areas, including for rare disorders such as phenylketonuria (PKU).

These guidelines are usually jointly developed by healthcare professionals, patients and researchers and aim to ensure the best possible management and outcome of the conditions they apply to. However, they take a great deal of effort to develop and agree, and ensuring their implementation is not always easy.

One of the reasons for this is the absence of a dedicated body or institute that can monitor guidelines once they have been developed and adopted by the community concerned.

Given the Commission’s track record in the area of rare disorders and the recent establishment of specific and specialised European Reference Networks (ERNs) on a variety of conditions:

Could a specific role for ERNs be envisaged in relation to monitoring and promoting the implementation of European treatment guidelines?

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