Information and Resources for Spina Bifida Patients and Families
Get comprehensive information and support for individuals living with Spina Bifida, their families, healthcare professionals, educators, and society. Discover resources, websites, social media platforms, e-learning opportunities, and more to empower and educate those affected by Spina Bifida.
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Presentation Transcript
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/kompetansesentre- og-tjenester/trs-kompetansesenter-for-sjeldne-diagnoser/sjeldne- diagnoser/ryggmargsbrokk References: https://www.sunnaas.no/fag-og-forskning/kompetansesentre-og- tjenester/trs-kompetansesenter-for-sjeldne-diagnoser/sjeldne- diagnoser/ryggmargsbrokk/referanser-til-medisinske-forhold-ved-ryggmargsbrokk More about Spina Bifida: https://www.sunnaas.no/fag-og- forskning/kompetansesentre-og-tjenester/trs-kompetansesenter-for-sjeldne- diagnoser/sjeldne-diagnoser/ryggmargsbrokk/andre-nettsider-informasjon-og- forskning-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-og- tjenester/trs-kompetansesenter-for-sjeldne-diagnoser/kurs-og-samlinger/e- lering Webinar: https://www.sunnaas.no/fag-og-forskning/kompetanse/digital- lering/webinar/overvekt-og-selvstendighet-hos-barn-og-unge-med- funksjonshemning Movies: https://www.youtube.com/watch?v=LaZQyNem-6A&t=141s https://www.youtube.com/watch?v=yLbmVcCq2Xg&t=186s
Print What is Spina Bifida Newborn with Spina Bifda Follow up guide for general practitioners: https://www.sunnaas.no/fag-og- forskning/kompetansesentre-og-tjenester/trs-kompetansesenter-for-sjeldne- diagnoser/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
