ACKNOWLEDGEMENTS

 For forældre, plejere, sundhedsplejersker og lærere opstår der ofte bekymringer og spørgsmål vedrørende pleje og velvære for personer med Pitt-Hopkins syndrome. 

The authors are very grateful to all individuals with PTHS, their parents, and other caregivers who attended the 2018 International PTHS World Conference. The authors are especially grateful to Piet Papavoine and John van Heukelingen of the Dutch Pitt-Hopkins Syndrome Foundation. The authors apologize to the many authors that they were unable to cite because of space limitations. The work at the Massachusetts General Hospital Pitt-Hopkins Clinic in Boston was supported by Walter Herlihy and Nancy LeGendre. The work at the Catholic University, Rome, was supported by Telethon, Project GEP14089.

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

CONFLICTS OF INTEREST

Nothing to declare.

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