The Eucomed Community Care Sector group invited the International Federation for Spina Bifida and Hydrocephalus (IF) to participate in a meeting of the group on 10 January 2012. Following a presentation on their key activities and focus areas, both organisations discussed the positive impact of medical technology on people suffering from spina bifida and hydrocephalus, and possible areas of collaboration in 2012.

Spina bifida is a birth defect that involves the incomplete development of the spinal cord or its coverings and hydrocephalus is an accumulation of fluid in and around the brain. Both conditions have a negative impact on people’s lives as they require lifelong medical care. Medical technologies are indispensable in the treatment and follow-up care of spina bifida and hydrocephalus.

The use of medical devices such as braces, crutches and wheelchairs greatly improves patients' mobility. Incontinence pads, urinary catheters and urinary diversion can also contribute to a better incontinence management and result in improved quality of life.

IF is currently working on key projects, including:

• The Annual International conference of Spina Bifida and Hydrocephalus “Finding Our Way”. The event will take place on 15-17 June 2012 in Stockholm. Around 400 participants (IF members, healthcare professionals, European Commission) will be attending.
• The first World Spina Bifida & Hydrocephalus Day will take place on 25 October 2012. From 22-26 October, a photo exhibition will be organised in the European Parliament in Strasbourg. In addition, IF will organise several sessions on access to healthcare, independent living, and inclusion in society. Networking events will also take place throughout the week.
• A Position Paper on “Ageing of People with SB & H”. In this paper they will address the fact that people with spina bifida and hydrocephalus are getting older without receiving any specific care, assistance or support. IF believes that there is a need for a multidisciplinary approach in healthcare, and home/community care should be applied as long as possible.

IF is the world-wide umbrella organisation (INGO) for Spina Bifida and Hydrocephalus organisations, consisting today of 43 regional and national umbrella organisations. It was created in 1979 by national organisations of people with these impairments and their parents. IF has intensive contacts with regional and national organisations in over 50 countries spread over five continents.

For more information about Community Care Sector group and its activities, please contact zuzana.fikarova@eucomed.org.