SAVE THE DATE!
What: 25th International Spina Bifida & Hydrocephalus Congress: "GENErating Changes" - toward a new scientific and social paradigm
When: 6 - 7 June 2014
Pte. Perón Avenue 1500
(CP 1629) Derqui, Pilar - Buenos Aires
Draft agenda: Download the draft programme
Note: to register for the IF General Meeting please follow this link
12 February 2014 // Last weekend, the IF Board met in Madrid at the new premises of La Asociación Madrileña de Espina Bífida (AMEB). Among the issues discussed were: review of the strategy, mission, budgetary issues, and statements.
One of the forthcoming innovations will be the establishment of a global network of experts, chaired by the IF President, Margo Whiteford. The network will consist of professionals, prominent scientists, and foremost specialists in their respective fields. The experts, coming from various areas, relevant to people with spina bifida and hydrocephalus, will become our spokespersons and we will base our official positions on their expertise. The main issues to be targeted by the network will be related to: Human Rights, Social Inclusion, Services and Care, Public Health, Causes, and Genetics. More details soon.
30 January 2014 // As youngsters with Spina Bifida age and reach adulthood, little is known about their needs and the barriers they face to achieve a good quality of life. Currently these two opportunities raised for youngsters and adults with Spina Bifida to share their experiences and opinions.
Especially teens are most welcome to participate in the Quality of Life in Spina Bifida study of Riley Hospital for Children, aimed at improving the medical care of persons with Spina Bifida.
Those over 18 years of age can also choose to take part in the Spina Bifida Adult Health Survey 2014, developed by Karlin Brueghel, a Ph.D. candidate at Palo Alto University who was born with Spina Bifida herself.