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  • IF - Forum
    home cerca sitemap contatti disclaimer Riguardo ad IF Spina Bifida Idrocefalo Gravidanza Folato Diritti umani Paesi in via di sviluppo Notizie Forum Links Forum Forum nuovo argomento Soggetto Autore Risposta

    Original URL path: http://ifglobal.sitehosting.be/forum.asp?lang=6&main=12 (2016-04-30)
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  • IF - Links
    Jersey The Jersey Association for Spina Bifida Hydrocephalus JASBAH http www jasbah online org Defaultx html Lussemburgo Association pour le Spina Bifida a s b l http www info handicap lu spinabifida index html Olanda BOSK Work Group Spina Bifida Hydrocephalus http www bosk nl Norvegia Ryggmargsbrokk og hydrocephalusforeningen http www ryggmargsbrokk org Polonia Stowarzyszenie Chorych z Przepuklina Oponowo Rdezeniowa R P ASBP http spinabifida w interia pl Portogallo Associação Spina Bifida e Hidrocefalia de Portugal ASBIHP http www asbihp org Scozia Scottish Spina Bifida Association SSBA http www ssba org uk Slovacchia Slovenská spolocnost pre spina bifida a alebo hydrocefalus o z http www sbah sk Spagna Federación Española de Asociaciones de Espina Bífida e Hidrocefalia FEBHI http www febhi org Asociacion de Padres con Hijos Espina Bifida APHEB http www gencat es entitats apafeb htm Federació D Espina Bífida I Hidrocefàlia Comunitat Valenciana http www terra es personal avesbi Federanción de Asociaciones de Espina Bífida de Andalucía distrito Espina bífida http www espinabifida com Svezia RBU http www rbu se Svizzera Schweizerische Vereinigung Spina Bifida und Hydrocephalus SBH http www spina hydro ch Turchia Spina Bifida Dernegi http med ege edu tr spina Spina Bifida Dernegi Ege Universitesi Tip Fakultesi Cocuk Cerrahisi AD Regno Unito Association for Spina Bifida and Hydrocephalus ASBAH http www asbah org Stati Uniti d America Spina Bifida Association of America SBAA http www sbaa org Hydrocephalus Association http www hydroassoc org Colorado Spina Bifida Association http www coloradospinabifida org Venezuela Asociación Venezolana de la Espina Bífida http www aveb com ve Links relativi alla Spina Bifida e all Idrocefalo The Anencephaly Information website Spina Bifida Research Bibliography Estonian Chamber of Disabled People www epikoda ee Support group for people with spina bifida alt support spina bifida Hydrocephalus Foundation aims to contribute emotional support to people with hydrocephalus and their family Pregnancy and Maternal Hydrocephalus Database Fetal Diagnosis and Therapy at Vanderbilt University Ryans Page Ryan was born with hydrocephalus at 23 weeks Website for adolescents with spina bifida and their families http www adolescentservices net http www cocemfe es Confederación Coordinadora Estatal de Minusválidos Físicos de España http www caritas es Cáritas Española http www cepes es La Confederación Empresarial Española de Economía Social CEPES http www spinabifidaitalia it Italian website dedicated to spina bifida Chat supporto e gruppi di discussione Scandinavian hydrocephalus chat group http uk groups yahoo com group hydrochat US based support group for parents raising children with spina bifida www spinabifidasupport com Disabilità Generale European Disability Forum http www edf feph org RADAR Royal Association for Disability and Rehabilitation HealthWrights is a non profit organization committed to advancing the health basic rights social equality and self determination of disadvantaged persons and groups The Politics of Health Knowledge Network is a forum for the exploration of the impact of political decisions on health Disability Now UK s most comprehensive archive of disability information Disability Net http www edfwomen org uk UK Disability Forum for European Affairs UKDFfEA Women s Committee

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  • IF - Search
    nederlands português italiano home search sitemap contact disclaimer About IF Spina Bifida Hydrocephalus Pregnancy Folate Human rights Developing countries Newsroom Forum Links Search Search Enter your search term here subscribe

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  • IF - About IF
    in 1979 by national organisations of people with these i mpairments and their parents Today IF s membership consists of 35 regional and n ational umbrella organisations for Spina Bifida and Hydrocephalus Further IF has an intense contact with regional and national organizations in over 50 countries spread over five continents IF aims to disseminate information and expertise throughout the world to families individuals professionals and volunteers involved in the Hydrocephalus and Spina Bifida field The mission of IF is to improve the quality of life of people with Spina Bifida and Hydrocephalus throughout the world and to decrease the prevalence of Spina Bifida and Hydrocephalus by primary prevention In industrialised countries the coming together of parents and adults with Spina Bifida and Hydrocephalus in national organisations was a significant step towards improvement of services These organisations have lobbied for and assisted in the establishment of better services for people and for their families who are now increasingly able to lead lives close to normal In developing countries however many survive but in conditions which for the individual and its family vary from appalling to inhuman While national organisations will specifically focus on service delivery in their own countries IF

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  • IF - About IF
    the quality of life and primary prevention are the motivation for everything IF undertakes This is the same for the IF member associations The most important way to fulfil that mission is to spread knowledge and to encourage contact between parents and persons with Spina Bifida and or Hydrocephalus The importance of contact is recognition not feeling alone or isolated learning from each other Parents as well as persons with Spina Bifida and or Hydrocephalus often mention how important these contacts are Knowledge is the first essential step towards minimising the effects of impairment It ensures that people with Spina Bifida and or Hydrocephalus are full partners in decision making and that carers professionals and persons with Spina Bifida and or Hydrocephalus all have access to the latest information IF s knowledge comes from its unique global network with member associations in more than 40 countries This network is the IF Knowledge Network exchanging knowledge information and examples of good practice at an international level IF does this by organising workshops and conferences and also through the IF projects in developing countries The IF Knowledge Network initiates encourages and facilitates research Parent groups and national associations play a key role

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  • IF - About IF
    and or Hydrocephalus Groups and organisations can contribute to IF s mission by supporting each other influencing legislation service delivery training etc To support those groups and organisations To influence the quality of service delivery to people with Spina Bifida and or Hydrocephalus world wide To facilitate and promote the exchange of knowledge information and examples of good practice at an international level work with international bodies UN WHO UNICEF

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  • IF - About IF
    Complete inclusion and equal rights should be standard but there is still a long way to go We should keep fighting for that ideal Mrs Renée Höglin Swedish nationality Profession a freelance writer and journalist Renée has a son with Spina Bifida and Hydrocephalus She has written three books on disability topics among them one called Have I Got A Chance With You which is now being published in Japan plus hundreds of articles and leaflets on issues of disability She has been a member of RBU the Swedish umbrella organisation for parents of children with mobility problems since the mid 70 s a Stockholm Board member from 1995 2004 and a national Board Member since 2003 She is a member of the Spina Bifida Hydrocephalus Committee of the national RBU together with Eva Toft and Karin Berggren She has also been the editor of a regional RBU member magazine Hört Hänt until spring this year She wants to contribute to the IF Board with her media knowledge and communication skills and her long experience as a parent of a son with SBH I would like to be engaged in the research and treatment of people with Spina Bifida and or Hydrocephalus in member countries and particularly in Africa Mr Jon Burke UK nationality Profession User Involvement Coordinator Jon has Spina Bifida and arrested Hydrocephalus as a result of this he is a full time wheelchair user He has 20 years experience of working in disability issues This includes time working for both statutory and non statutory organisations specialising in supporting the development of disabled people and disability organisations Examples of this include the development of a youth section of a national disability organisation the setting up and project managing of an IT training organisation for disabled people which was involved in a variety of EU funded programmes and more He was a founder member of Your Voice the disabled service users section of Asbah and he is the current Chair of the group His parents were involved in the setting up of a local association for Spina Bifida and Hydrocephalus the year after the national association was set up He gained a degree in Politics and History in 2002 after studying for a number of years as a mature student I would particularly like to support the IF Boards work in developing services for people with Spina Bifida and or Hydrocephalus as well as helping to get more disabled service users involved in contributing to and running their own services Mr Luis Quaresma Portuguese nationality Profession member of ASBIHP Luis is an adult with Spina Bifida and he has worked for ASBIHP for the last 15 years and he is the President of the Board During the last two years he has been part of the development of several projects that will contribute to the improvement of the quality of life of people with Spina Bifida and or Hydrocephalus He was also a member of the CNOD National Council

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  • IF - About IF
    Kristin Edwardsen E mail Ann Eli Spiten E mail leder ryggmargsbrokk org Web www ryggmargsbrokk org Peru Asociacion Peruana de Espina Bifida e Hidrocephalia Arequipa APEBHI Av Jorge Chavez 527 Cerado Arequipa Tel 054 206720 LO Mrs Sara Valdivia de Monroy E mail monroy h panam com pe Asociación de Espina Bífida e Hidrocefalia del Perú ASESBIH Av La Capilla 1151 Dpto 301 Rímac Lima 25 Tel 381 3527 Tel 9999 5533 Fax 433 6887 LO Mr Hugo Huapaya Rueda LO Mrs Delmy Pino Díaz E mail info asesbihperu org E mail delmy pino terra com pe http www asesbihperu org Poland Stowarzyszenie Chorych z Przepuklin Oponowo Rdezeniow R P ASBP ul elazowej Woli 20 39A 20 853 Lublin Tel 48 81 744 75 18 Fax 48 81 443 85 76 LO Mr Jaroslaw Maruszczak E mail 4maruszki neostrada pl http spinabifida w interia pl Portugal Associação Spina Bifida e Hidrocefalia de Portugal ASBIHP Rua Botelho Vasconcelos Lote 567 C D P 1900 637 Lisbon Tel 351 218 596 768 Fax 351 218 596 768 LO João Coelho Email sede asbihp pt http www asbihp pt Romania Asociatia Romana de Spina Bifida si Hidrocefalie Strada Secuilor Nr 7 Bloc B31 Sc 3 Et 2 Ap 38 Sector 4 Bucuresti LO Diga George Email diga george yahoo com Tel Fax 021 332 42 72 http www arsbh ro Russia Association of Spina Bifida and Hydrocephalus St Petersburg 198097 SPb Stachek prosp 35 6 St Petersburg Tel 7 812 252 5137 Fax 7 812 252 5137 LO Mrs Irina Rogaleva Email spinabifida mail ru Scotland Scottish Spina Bifida Association SSBA The Dan Young Building 6 Craighalbert Way Dullatur Cumbernauld G68 0LS Tel 44 0 1236 794500 DDI 44 0 1236 794507 Fax 44 0 1236 736435 LO Ms Julie Snaddon E mail julie ssba org uk http www ssba org uk Slovakia Slovenská spoločnos pre spina bifida a alebo hydrocefalus o z SNP 14 919 04 Smolenice Tel 421 905 323 465 Tel 421 335 587 198 LO Mr Andrej Drdul E mail drdulA ba zse sk http www sbah sk Spain Federación Española de Asociaciones de Espina Bífida e Hidrocefalia FEBHI Pechuán 14 local 6 28002 Madrid Tel 34 91 415 20 13 Cell phone 34 650 39 63 41 Fax 34 91 413 58 45 LO Mr Aitor Lascurain E mail proyectos febhi org http www febhi org Associació Catalana d Espina Bífida i Hidrocefàlia Sorolla 10 Baixos E Barcelona 08035 Tel 34 93 428 2180 Fax 34 93 428 1934 LO Arantxa Ormazabal E mail adm acaebh telefonica net http www espinabifida cat Sweden RBU Box 8026 S 104 20 Stockholm Tel 46 8 677 73 00 Fax 46 8 677 73 09 LO Mrs Eva Toft E mail eva toft telia com http www rbu se Switzerland Schweizerische Vereinigung Spina Bifida und Hydrocephalus SBH Rue du Joliment 22 2525 Le Landeron Tel 41 32 751 14 32 Fax 41 32 751 14 32 LO Mrs Ines Boekholt E

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