Screen Shot 2018 01 30 at 15.15.1029 January 2018 // IF members know better than anyone else just what it takes to juggle the demands of a fast-paced working life with their care responsibilities. Recurrent medical appointments, accompanying the child to school and helping out with catheterisation, overcoming obstacles and prejudice… Once the child grows up, the parents and siblings often continue providing care, especially when barriers are commonplace and state-provided personal assistance – a rarity. The employers are not always accommodating, and family members (usually, mothers!) are forced to reduce their career ambitions, work part-time or quit working altogether.

Stockholm 27 January 2018 // On Sunday 26 November 2017, IF organised a joint session for representatives of its European member associations and a group of Spina Bifida and Hydrocephalus (SBH) clinicians, involved in the European Reference Network (ERN) ITHACA (on congenital malformations and rare intellectual disability), as part of its European Workshop in Stockholm, Sweden. The purpose of this day was to highlight the importance of cooperation between healthcare providers and SBH associations.

 

Screen Shot 2018 01 24 at 15.27.1324 January 2018 // We are happy to announce that our proposal for the four-year agreement to support European networks in the area of rights of persons with disabilities was approved by the European Commission. In 2018-2021, IF will continue its fight for the human rights of children and adults with Spina Bifida and Hydrocephalus (SBH).

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