Communication and information about Spina bifida By Thale

Communication and information about Spina bifida By Thale Hartmann E-mail: thale. hartmann@sunnaas. no

Target groups • • • People living with Spina Bifida Parents, siblings and other family Health professionals, both local caretakers and specialists Teachers an people working in schools Employees in social services Society in general

Websites • www. sunnaas. no/trs – About Spina Bifida: https: //www. sunnaas. no/fag-og-forskning/kompetansesentreog-tjenester/trs-kompetansesenter-for-sjeldne-diagnoser/sjeldnediagnoser/ryggmargsbrokk – References: https: //www. sunnaas. no/fag-og-forskning/kompetansesentre-ogtjenester/trs-kompetansesenter-for-sjeldne-diagnoser/sjeldnediagnoser/ryggmargsbrokk/referanser-til-medisinske-forhold-ved-ryggmargsbrokk – More about Spina Bifida: https: //www. sunnaas. no/fag-ogforskning/kompetansesentre-og-tjenester/trs-kompetansesenter-for-sjeldnediagnoser/sjeldne-diagnoser/ryggmargsbrokk/andre-nettsider-informasjon-ogforskning-om-ryggmargsbrokk • Sjelden. no • Helsenorge. no • Norwegian National Advisory Unit on Rare Disorders

Social media • Facebook • Twitter National help line Operated by Norwegian National Advisory Unit on Rare Disorders: 800 41 710

E-learning and movies • E-learning: https: //www. sunnaas. no/fag-og-forskning/kompetansesentre-ogtjenester/trs-kompetansesenter-for-sjeldne-diagnoser/kurs-og-samlinger/elering • Webinar: https: //www. sunnaas. no/fag-og-forskning/kompetanse/digitallering/webinar/overvekt-og-selvstendighet-hos-barn-og-unge-medfunksjonshemning • Movies: – https: //www. youtube. com/watch? v=La. ZQy. Nem-6 A&t=141 s – https: //www. youtube. com/watch? v=y. Lbm. Vc. Cq 2 Xg&t=186 s

Print • What is Spina Bifida • Newborn with Spina Bifda • Follow up guide for general practitioners: https: //www. sunnaas. no/fag-ogforskning/kompetansesentre-og-tjenester/trs-kompetansesenter-for-sjeldnediagnoser/sjeldne-diagnoser/ryggmargsbrokk/medisinsk-oppfolging-av-voksne -med-ryggmargsbrokk • Sexuality and Spina Bifida, short and long version • Drivers License • Work life • Neurological follow up • Urinary tract : follow up • Pressure sores: follow up