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About this website


The original version of this website (in Dutch) was developed by project group 'SO' (Seksuele Ondersteuning anorectale malformatie & ziekte van Hirschsprung) in close collaboration with patients and specialist practitioners in the Netherlands. The project was funded by the Innovation Fund and was implemented by Erasmus MC Rotterdam and Athena Institute (Vrije Universiteit Amsterdam) in collaboration with Radboud UMC Nijmegen, UMC Utrecht, Amsterdam UMC, the Anal atresia and Hirschsprung's disease patient associations, Association of Collaborating Parent and Patient Organisations (VSOP), the Dutch Society for Sexology and the Ilvy Network. It was also supported by UMC Groningen and Maastricht UMC. See research paper by Violet Petits-Steeghs et al. (2020) for more information on the project.

The European Reference Network for Rare Inherited Congenital Anomalies (ERNICA) and The European Reference Network for Rare and Complex Urogenital Conditions (eUROGEN) agreed for ERNICA (Coordinated by Erasmus MC in Rotterdam) to translate the co-created website into English, adapt it (where relevant) for an international audience and host the websites (in Dutch and in English) as an extension to its public website.

Original Dutch texts:

Marleen Kamminga - Marleensbureau


Jochem Galama - Contour – ids

Website evaluation:

ERNICA and eUROGEN are carrying out an evaluation of this sexual support website to evaluate the use, relevance, expected empowerment effect and experience of the website tool on healthcare professionals, patients, parents and other relations on an international level. Find out more here. This evaluation aims to identify areas where the website can be optimised to ensure it is fit for purpose and meets the needs of users. 


Do you have any further questions or comments? Then you can contact ERNICA Project Manager Olivia Spivack:

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