PKU Guidelines - A way to optimal care

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    • PKU Guidelines - A way to optimal care

      As many of you might know E.S.PKU has been working hard to publish the Consensus Paper. The goal of this paper, supported by all member organizations of E.S.PKU, representing a majority of Europe, was to lay down what's been expected by us (patients, parents, relatives, partners, ...) for optimal care in PKU. This paper should be the starting point for experts all around Europe to pick up and work on European Guidelines for the optimal care in PKU. This is what the expert group, around the lead of Dr. Franjan van Spronsen, has been working on for the past two years. The outcome should be a publication of the first European Guidelines in 2015 at the E.S.PKU conference 2015.

      This is a litte background story about this very interesting topic. Now I wanted to start a discussion on what YOU think about such guidelines and what you would like to see settled there. Currently treatment is very different all around Europe, which was also noticed in the report "Closing Gaps in Care" done by the E.S.PKU. So I'm sure you have your story to tell! - since 2004 - Invite your friends