IF leaders’ strategic meeting in Madrid

Margo Whiteford, Jackie Bland, Lumbwe Chiwele, Thelma Cloake, David Diaz Garcia, Marit Fjellhaug Nylund, Emine Nurdan Anli, Elena Zappoli, and Lieven Bauwens12 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.

Spina Bifida surveys to improve quality of life

The Flemish Spina Bifida association organises youth camps for teens with Spina Bifida and Hydrocephalus to increase their skills towards independence and self-reliance30 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 Bruegel, a Ph.D. candidate at Palo Alto University who was born with Spina Bifida herself.

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Holocaust Remembrance Day: recalling the genocide of tens of thousands that did not fit the Nazi ideology

Practices, like the Groningen Protocol, that counsel parents that it is best for babies to die because they have severe impairments, violate international human rights standardsJanuary 27 marks the International Holocaust Remembrance Day. This year on this occasion, Disabled People's International (DPI) and IF opened an exhibition on disability and Aktion T4 in the Library of the Royal Palace of Naples (Italy) and the Museum Dr. Guislain in Ghent (Belgium).

Pierre Mertens, IF's past President created an installation on both locations which incorporate Hitler's letter in Braille. In this letter Hitler gave orders to the "mercy killing" of persons with a disability or those with a psychiatric condition. One of the arguments used to kill around 200 000 people was unbearable pain and the meaningless life of these individuals. At the international conference in Napels, Pierre Mertens held a lecture which focused on the selection of birth defects and the Groningen Protocol.

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