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  • IF - Noticias
    people can retrieve information ask questions or leave ideas and information for others An IF working group together with IT experts worked on this concept We soon have a trial version and strategy to continue this project in the coming years This way IF grows into a young and modern Federation This year IF is 25 years young Crossing Borders is also about our own limits To be locked up in a dull and pre pre planned sort of life probably looks like the Rumanian sand castle on the beach Borders which were determined by your environment culture upbringing and impairment and which you never question When you have a severe impairment those borders are much clearer and visible You are liable to encounter those borders and limitations much quicker Many people with Spina Bifida have been able to move or even overcome or get round those borders and limitations Sometimes they have achieved small but also big victories Even the simplest things can become challenges for people with disabilities Modern science an research are also constantly shifting borders so offering new opportunities For instance the treatment of Hydrocephalus without shunting is one of them Another is the progress in effective continence management without useless surgery Crossing borders can also go wrong Guarding these borders is very important If now we have a tendency to overtake ourselves We want more than we can handle Being limited forces you to choose You go for what you really want the essence of the matter Crossing borders can also mean that you know where the limit is and deal with it appropriately Be able to say no if something is impossible Inclusion is not an objective in itself if it means that you will suffer as a result Inclusion is a great result and built up out of many individual factors Inclusion is what we would like to see Sometimes the borders are not of our own making They are the results of a malfunctioning society In that case Crossing borders means to fight the world around us If people cross our borders unsolicited these borders should be redefined Borders can also become somewhat obscure and you let things happen you really do not want For instance the right to decide about your own money your own health and body In science something new is not always an improvement As a user organization we must not only stimulate science but also question and direct I am thinking about some of the urological procedures which were announced It was only after some years that we learned that they are either not functional or have a lot of side effects sometimes with an irreversible loss of vital functions and large and ugly scars I also would like to mention the social evolution whereby children with an impairment are being eliminated after a prenatal diagnosis This is an example where ethical borders are being crossed Being users we must be critical and draw the line To

    Original URL path: http://ifglobal.sitehosting.be/newsroom.asp?lang=2&main=11&sub=1&art=20041004135502 (2016-04-30)
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  • IF - Noticias
    problems systems and helpers 6 creativity lack of rigidity ability to use traditional elements in new ways to solve problems 7 sophisticated future orientation planning around anticipated obstacles 8 abiltity to read others attitudes skill at filling in the gaps and sorting out contradictory messages More articles 19 02 2008 IF international ListServ 14 03 2008 Dutch Health Council advices on optimal use of Folic Acid 25 04 2007 La 18a IF Conferencia Internacional Tomorrow Mañana 19 04 2007 Visita de entrenamiento de IF en Vietnam 19 04 2007 Entrenamiento en el orfanato Go Vap 23 01 2007 Visitas a las casas de dos familias el las afueras de Moshi Tanzania 11 01 2007 enanos y espina bifida 5 01 2007 No sentirse abandonado 13 11 2006 Propuesta para la fortificación obligatoria de pan fue aprobada 16 10 2006 Dr Borgstein 16 10 2006 Presentación del señor Pierre Mertens 12 10 2006 Message from Geert Vanneste 12 10 2006 Un breve reporte de Polonia 7 09 2006 Médicos en Holanda restituyen la sensación en el pene 15 05 2006 La junta directiva de la Agencia de Estándares en Alimentos FSA delibera sobre acido fólico y salud 15 05 2006 Actualización sobre la campana de IF para fortificación obligatoria de alimentos 15 05 2006 El tratamiento CIC en el Vietnam 15 05 2006 La primera actualización sobre Espina Bifida e Hidrocefalia en la India 19 12 2005 IF y su miembro en Holanda BOSK toman acción contra el protocolo de Groningen 25 10 2005 Programa de Radio BBC 4 sobre Espina Bifida en Guatemala 24 10 2005 Publicaciones de la SBAA Guía para adultos con Espina Bifida 24 10 2005 El huracán Stan afecta muchas personas discapacitadas en Guatemala 4 10 2005 VI Congreso virtual Integración sin Barreras en el Siglo

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  • IF - Noticias
    wheelchair with a disability that is physical You should not have special physiotherapists or nurses who come in to school to help the disabled child for in fact that hinders the child s independence and relationship with the teachers and class Ordinary medical professionals should come in when the rest of the class are participating in activities that the disabled child cannot take part in e g gym as so to not miss the more important subjects such as English Science and Mathematics Teachers should be prepared to make certain exceptions for disabled children e g giving them more time to do certain work especially when the child has hydrocephalus or Downs Syndrome et cetera or take tests orally when writing is extremely difficult or the child cannot write Though teachers should not stop children from participating in games that the child thinks that she or he may be able to cope For example my teachers would not let me participate in a game of netball in my wheel chair although I was a fairly experienced wheelchair user at the time They should also let children have their own views and listen to their ideas during a class discussion as their ideas can always be as valuable as the next child with or without a disability I speak from my heart and own experience in that particular matter No one should be told you can t do that because every child can surprise its parent teacher doctor or relative my parents were told that Russell House would not be suitable because of the stairs But that was no problem I also walked before I was eight which I wasn t supposed to do Changing the subject Abortion Unless continuing the pregnancy is a great risk the mother or baby s life I would not abort Abortion is a very cruel way to end a life even a life that has not been out into the world I think that most parents would agree with me it is cruel not even to let some one try to live Liesje shows what you can do when you try for instance recently I have gone on a very long walk or rather wheel in my case in rather muddy conditions in France also I have learnt to play wheelchair tennis Another great achievement for people with Spina Bifida is swimming I swam 1000 meters in May These are my thoughts on Liesje and matters related to the story I hope that they will be useful to you and that you understand them Yours sincerely Emily Lindsay More articles 19 02 2008 IF international ListServ 14 03 2008 Dutch Health Council advices on optimal use of Folic Acid 25 04 2007 La 18a IF Conferencia Internacional Tomorrow Mañana 19 04 2007 Visita de entrenamiento de IF en Vietnam 19 04 2007 Entrenamiento en el orfanato Go Vap 23 01 2007 Visitas a las casas de dos familias el las afueras de Moshi Tanzania 11

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  • IF - Foros
    IF Espina Bifida Hidrocefalia Embarazo Folate Derechos humanos Paises en desarrollo Noticias Foros Conecciones Foros Foros subject list The forum has temporarily been disabled due to excessive spam attacks We will try to find a solution as soon as possible

    Original URL path: http://ifglobal.sitehosting.be/forum.asp?lang=2&main=12&mode=new (2016-04-30)
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  • IF - Chercher
    português italiano home chercher sitemap contact disclaimer Sur IF Le Spina Bifida Hydrocephalus Enceinte Folate Droits humaines Pays en développement Nouvelles Forum Links Cherchez Chercher Enter your search term here

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  • IF - Sur IF
    Aujourd hui les membres de l IF sont des organisations nationales pour le Spina Bifida et l Hydrocéphalie répartis dans plus de 40 pays L IF a pour objectif de délivrer informations et conseils à travers le monde aux familles aux personnes atteintes aux professionnels et aux bénévoles concernés par le domaine du Spina Bifida et de l Hydrocéphalie La mission de l IF est d améliorer la qualité de vie des personnes avec Spina Bifida ou Hydrocéphalie dans le monde entier et de réduire la fréquence du Spina Bifida et de l Hydrocéphalie par la prévention primaire Dans les pays industrialisés le regroupement de parents et d adultes avec Spina Bifida et Hydrocéphalie dans des organisations nationales a été un pas déterminant vers l amélioration des services Ces organisations ont milité et aidé à la mise en place de meilleurs services pour les personnes et leurs familles ceux ci parviennent de plus en plus à mener des vies proches de la normale Dans les pays en voie de développement cependant beaucoup survivent mais dans des conditions épouvantables voire inhumaines pour l individu et sa famille Alors que les organisations nationales se concentrent sur les services à rendre dans leur

    Original URL path: http://ifglobal.sitehosting.be/about_if.asp?lang=3&main=5&sub=1 (2016-04-30)
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  • IF - Sur IF
    l IF La meilleure façon de remplir cette mission est de répandre les connaissances et d encourager les contacts entre parents et personnes atteintes de spina bifida et ou hydrocéphalie Les contacts sont importants parce qu ils permettent d être reconnu de ne plus se sentir seul ou isolé d apprendre les uns des autres Les parents aussi bien que les personnes atteintes de spina bifida et ou hydrocéphalie font souvent remarquer combien ces contacts sont importants La connaissance est la première condition essentielle pour minimiser les effets de la maladie En effet elle permet aux personnes avec spina bifida et ou hydrocéphalie d être partie prenante lors de la prise de décisions Par ailleurs le site permet aux professionnels de santé et aux PASBH d avoir accès à l information la plus récente La connaissance de l IF provient de son réseau mondial unique composé d associations membres dans plus de 40 pays Ce réseau s appelle le Centre d Information de l IF il échange des connaissances des informations et des expériences à un niveau international L IF réalise cela par le biais d ateliers de conférences et aussi de projets dans les pays en voie de développement

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  • IF - Sur IF
    s entraidant en influençant la législation en organisant des services et des formations Aider ces groupes et organisations Améliorer la qualité des services rendus aux personnes avec spina bifida et hydrocéphalie à travers le monde Faciliter et promouvoir l échange des connaissances informations et expériences à un niveau international travail réalisé avec des organisations internationales Nations Unies OMS Organisation Mondiale de la Santé UNICEF Conseil européen L Union Européenne le

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