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IF workshop in Madrid

20 November 2018

On 17-18 November 2018, IF was in Madrid for its European Workshop. The main topics were continence management and ageing with spina bifida and hydrocephalus. The workshop was also an opportunity for IF to share the main upcoming activities and to update its members on its priorities for 2019.

The first session focused on ‘’Adulthood and ageing with SBH’’ and was conducted by our spanish member organisation and host of this workshop, AMEB, presenting on its day center. They highlighted the importance of a person-oriented focus, which requires, among other values, promotion of active participation in society, involvement of family and friends and development of personal and professional competencies. The session concluded with a discussion around a project for 2019: IF Working Group on Ageing. Members are encouraged to actively involve their organisations and representatives to further develop this group and its objectives.

Katie Dunphy, from our member organisation Spina Bifida Hydrocephalus Ireland, presented ‘Catheterisation in schools – an Irish perspective’ to explain how they support and help both parents and schools on continence management in order to improve the quality of life of the students with spina bifida and/or hydrocephalus. Her presentation and an informative PDF are available to download.

In the afternoon, IF presented on its 2019 activities to raise awareness on the right to toilet and, after a presentation of IF’s activities on Right of Toilet 2019 and good practices of intimate care policies, we organized a training about continence management in Spain. The training was conducted by Dr. Laura Burgos Lucena, expert in paediatric surgery, who talked about continence products, how to use them and why they’re important. The day concluded with the IF General Assembly, in which members approved:

– the new membership structure, to be published soon.

– new members: CORPEB from Chile, WAAD from Egypt, ASBH from France, KSBPA from Korea, TSBA from Taiwan, LHF from Nigeria and ‘Lights of Spirit’ from Ukraine.

– re-election of Emma Suardiaz (Spain) and Frantisek Horn (Slovakia) as IF board members.

The second day of the workshop was primarily focused on IF work plan and vision for 2019: Members learnt about the process and developments of the multidisciplinary care study and about the survey on sexuality developed by a group of young people with SBH and coordinated by IF.

The European Elections, taking place in May 2019, was also part of the informative session and IF suggested an activity to the EU members in order to promote the rights of people with SBH at local/regional/national/European level.

The next European workshop will be in Belgrade, Serbia in May 2019.