Webinar and Focus Group Discussion “Ageing with SBH”


Due to improvement of healthcare, many children born with Spina Bifida and Hydrocephalus have become adults, and are reaching their senior years. Little is known about ageing with SBH and its impact on physiology, mental abilities and independence. IF’s key objective is to improve our understanding of the lived experiences of older persons with SBH. Therefore, IF has emphasized the importance of raising awareness for ageing with SBH.  

To highlight the rights and needs for individuals with SBH, IF launched the report “Ageing with Spina Bifida and Hydrocephalus – A descriptive analysis”. This report includes a set of recommendations to work towards preventing and minimising the ill effects of ageing and to help improve the quality of life of people ageing with SBH. 

To gain greater insights into the perceived needs of individuals with SBH with respect to ageing, the IF Working Group on Ageing will organise its first focus group discussion with interested members across the world. 

The webinar including focus group discussions takes place on Wednesday, 23rd of June 2021 at 3pm (CEST).  This webinar is open to all IF Members across the world. 

Join the webinar and feel welcome to share your experiences with other individuals with spina bifida and/or hydrocephalus in the focus group discussion.

Registration is open for all members across the world. If you have any questions or comments, please contact, IF Project Manager, Selma Cela at selma.cela@ifglobal.org.


3pm – 3.10pm Word of welcome Dr. Sylvia Roozen 

IF Secretary General

3.10pm – 3.15pm Introduction IF Working Group on Ageing Cato Lie

IF President

3.15pm – 3.45pm Ageing with SBH – a descriptive study by the IF Working Group on Ageing Kevin O’Donnell

Spina Bifida and Hydrocephalus Scotland 

Sharon Levy

Spina Bifida and Hydrocephalus Scotland 

3.45pm – 4.15pm  Adults with Spina Bifida – voices from everyday life and exploration of living conditions Dr. Hanna Gabrielsson

Spin-off Sweden 

4.15pm – 5pm Break-out session

  1. Mental & physical health and ageing characteristics
All participants 
5pm – 5.15pm Concluding remarks & wrap up  Discussion leaders break-out sessions


Cato Lie

IF President