Annemiek Landlust’s Post

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Gezondheidszorgpsycholoog & promovendus

Conny van Ravenswaaij-Arts and Michael Schon presented the European guideline on Phelan-McDermid syndrome at the II European conference about Phelan-McDermid in Madrid this weekend. They did such a good job explaining the purposes of the guideline and the integration of parental perspectives in all stages of the guideline. Allison Turner and Rui Barbosa Guedes stressed the importance of the parental perspective as lived experience representatives of the European consortium. We presented three posters. Two posters based on the guideline, recommendations on sleep issues and the guideline parental survey. And a poster on evaluating treatment efficacy of intranasal insulin in Phelan-McDermid syndrome. It was incredible to be a part of this immense project with all of these motivated and experienced people. We will rock on 🤟 in Ulm, Germany in October! You can find the complete guideline here: https://lnkd.in/e4hpcHJZ

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Important work in collaboration with many European patient representatives!

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