RELEVANT RESOURCES

See the websites below for relevant resources. Some websites are available only in Dutch or another language other than English. In these cases, text can be translated or you can open the link in Google Chrome and make use of the translation function to translate the website: See browser settings - Languages.

European Reference Networks, consortiums and other organisations:

• The European Reference Network for Rare Inherited Congenital Anomalies (ERNICA)
• The European Reference Network for Rare and Complex Urogenital Conditions (eUROGEN)
• eUROGEN information on anorectal malformations
• ERNICA information on Hirschsprung's disease
• ARM-Net Consortium
• The Stomach Liver and Intestine Foundation in the Netherlands [Available in Dutch]
• The Sick and Sex Foundation in the Netherlands [Available in Dutch]
• Stoma Association in the Netherlands [Available in Dutch]

Patient organisations Hirschsprung's disease:

• Italian patient organisation (Amorhi)
• Dutch patient organisation (Vereniging Ziekte van Hirschsprung’s)
• German patient organisation (SoMA)

Patient organisations anorectal malformations:

• Dutch patient organisation (Vereniging Anus Atresia)
• Italian patient organisation (Associazione Italiana per le Malformazioni Anorettali)
• German patient organisation (SoMA)

More information for parents: 

• ERNICA animations for patients and families related to Hirschsprung's disease
• Information books by Sanderijn van der Droef [Available in various languages]
• About (advice) on stretching the anus [Available in Dutch]
• About (advice) on colon flushes [Available in Dutch]
• About toddlers being incontinent [Available in Dutch]
• About the parent-child relationship when the child is chronically ill [Available in Dutch]
• About sex education for children [Book available in Dutch only at present]
• About bullying and resilience of children  [Available in Dutch]
• About the experiences of children aged 6-9 years with Hirschsprung's disease [Dutch video which can be Auto-translated into multiple languages via YouTube].
• About the sexual education of children from 9-15 years old and sex education by age group [Available in Dutch]
• About the sexual development of children with a disorder [Available in Dutch]
• About the experiences of a 12-year-old boy with an anorectal malformation [Dutch video which you can Auto-translate into multiple languages via YouTube].
• Informative resources (in English and in other languages) from the Rutgers Knowledge Centre on Sexuality in the Netherlands 
• Link in Dutch about the transition from adolescent to adult in case of a chronic disorder. 

More information for children and young patients:

• Klokhuis film (in Dutch) on how food becomes poop
• ERNICA animation (0.12-1.16) showing digestion process - (not specifically developed for young children)
• ERNICA animations for patients and families related to Hirschsprung's disease
• Chat or call via child helplines
• Magazine about sex and love for young people with a chronic illness or disability [Available in Dutch]
• About self-gratification [Available in Dutch]
• About pain during sex  [Available in Dutch]
• About vaginismus [Available in Dutch]
• About ejaculating/coming too quickly and tricks to delay it [Available in Dutch]
• About 'dry ejaculation' [Available in Dutch]
• Erection problems [Available in Dutch]
• About (no) sex drive [Available in Dutch]
• Tips on sex, positions and so on [Available in English and Dutch]
• For all your questions about sex [Available in English and Dutch]
• Scientific insights about sex drive in women and how this works [Available in Dutch]

More information for adult patients:

• About self-gratification [Available in Dutch]
• About sexuality and a chronic illness [Available in Dutch]
• About sexuality and having a stoma [Available in Dutch]
• About pain during sex [Available in Dutch]
• About vaginismus [Available in Dutch]
• About (no) desire for sex [Available in Dutch]
• About 'dry ejaculation' [Available in Dutch]
• Erection problems [Available in Dutch]

More information for healthcare professionals:

• Tips for conversation skills: www.seksindepraktijk.nl and www.zanzu.nl/voor-professionals [Available in Dutch]
• ERNICA transition (from pediatric to adult care) video series (ERNICA YouTube channel)