Take part in the Quality of Life in Spina Bifida survey!10 December 2013 // Take part in the global Quality of life in children and adults with SpinaBifida survey of the Division of Pediatric Urology at Riley Hospital for Children under the supervision of Dr. Rosalia Misseri and help improve care for all!

The study is open to anyone over the age of 8 with Spina Bifida who had spine surgery as a newborn as well as their caregivers/parents. Participants are welcome from all over the world! More information can be found on the survey page: http://www.surveymonkey.com/s/QSB.
Taking part in this study is voluntary. You may choose not to take part or leave the study at any time.

Travelling is still a real challenge for people with Spina Bifida and Hydrocephalus3 December 2013 traditionally marks the International Day of People with Disabilities which aims to raise awareness of disability as a cross cutting development issue and to encourage working towards a more inclusive society for the estimated one billion people living with a disability around the world. This year it is celebrated in the capital of Europe with a conference on accessible tourism. Travelling is still a real challenge for some people with disabilities, as accessing information, using travel services, or finding accessible accommodation often prove to be difficult, costly and time consuming. People with spina bifida and/or hydrocephalus, with often limited mobility, share these concerns while travelling or using public transport, facing additional barriers in their everyday lives.

Newborns with Spina Bifida still suffer from negative stereotyping

28 November // Until April 2008 EDF had 8 committees to provide assistance and advice on specific policy areas that were particularly relevant for people with disabilities, and therefore were also a work priority for the organisation. After this date, the EDF Board in Brussels decided to revise the EDF Committees structure, to work in a more flexible and proactive way in order to better answer the needs of EDF. IF Secretary-General has now joined 2 EDF email Expert Groups, International cooperation and Access to health & health stereotypes.

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