{"id":8,"date":"2023-11-20T18:10:26","date_gmt":"2023-11-20T18:10:26","guid":{"rendered":"https:\/\/faraeurope.wpenginepowered.com\/?page_id=8"},"modified":"2024-05-23T14:19:12","modified_gmt":"2024-05-23T14:19:12","slug":"about","status":"publish","type":"page","link":"https:\/\/curefa-europe.org\/nl\/about\/","title":{"rendered":"Over FARA Europe"},"content":{"rendered":"<h6 class=\"wp-block-heading has-secondary-color has-text-color has-link-color wp-elements-8d2cb80563d0764bb20e7cb0dd1fe103\">ONZE MISSIE<\/h6>\n\n\n\n<h2 class=\"wp-block-heading\">Missie FARA Europe<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">De missie van de stichting FARA Europe is om in Europa en wereldwijd de middelen en relaties te bundelen die nodig zijn om ataxie van Friedreich (FA) te behandelen en te genezen. Hiermee willen we behandelingen bevorderen die FA vertragen, stoppen of omkeren, onderzoekers en mensen die leven met FA mondiger maken, en wereldwijd klinisch onderzoek faciliteren.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Het bereiken van deze missie zal een diepgaande invloed hebben op de kwaliteit van leven van mensen met de diagnose FA, hun gezinnen en verzorgers. Deze missie hopen we te realiseren door fondsen te werven voor onderzoek, bewustzijn te bevorderen en door wetenschappers, klinische netwerken, overheidsinstanties, farmaceutische bedrijven en andere FA-organisaties die deze missie delen, te ondersteunen.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">De Stichting deelt het doel met de Friedreich's Ataxia Research Alliance (FARA) om de middelen die nodig zijn voor de behandeling en genezing van FA te bundelen. FARA is een non-profit organisatie opgericht en geregistreerd in de Verenigde Staten van Amerika.<\/p>\n\n\n\n<h6 class=\"wp-block-heading has-secondary-color has-text-color has-link-color wp-elements-daaeef61d3ab69cfc8d78a1acf470a49\">ONZE STRATEGIE<\/h6>\n\n\n\n<h2 class=\"wp-block-heading\">ONZE STRATEGIE<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">De strategische prioriteiten en activiteiten van FARA Europe zijn:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Ondersteunen en samenbrengen van de klinische infrastructuur in Europa en wereldwijd om een FA Global Clinical Consortium (FA GCC) te cre\u00ebren dat bijdraagt aan nieuwe behandelingen van FA en deze versnelt.<\/li>\n\n\n\n<li>Inzetten van bestaande middelen naast financi\u00eble steun voor de oprichting en het voortbestaan van het FA GCC.<\/li>\n\n\n\n<li>Delen van kennis en knowhow om FA-onderzoek te versnellen.<\/li>\n\n\n\n<li>Samenwerken met alle belanghebbenden: onderzoekers, artsen, FA-gezinnen, de industrie en overheidspartners, om onze missie te realiseren om FA te vertragen, te stoppen of om te keren.<\/li>\n\n\n\n<li>Ontwikkelen van middelen die wereldwijd alle therapie\u00ebn op het gebied van FA bevorderen.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/curefa-europe.org\/wp-content\/uploads\/2023\/11\/FARA-EU-Policy-plan.pdf\" data-type=\"attachment\" data-id=\"48\">Klik hier voor de volledige strategische prioriteiten en activiteiten van FARA Europe<\/a><\/p>\n\n\n\n<h6 class=\"wp-block-heading has-secondary-color has-text-color has-link-color wp-elements-591af0b72922d93011eea681f290532f\">BESTUUR<\/h6>\n\n\n\n<h2 class=\"wp-block-heading\">Ons oprichtingsbestuur<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">In overeenstemming met de visie van FARA, bestaat het oprichtingsbestuur van FARA Europe uit vertegenwoordigers van zowel de internationale wetenschappelijke FA-gemeenschap als van gezinnen die leven met FA:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Acton, R. - penningmeester<\/li>\n\n\n\n<li>Avery, P. - voorzitter<\/li>\n\n\n\n<li>Brennan, B. - secretaris<\/li>\n\n\n\n<li>Brenninkmeijer, T.<\/li>\n\n\n\n<li>Hamilton, T.<\/li>\n\n\n\n<li>Manfredi, G.<\/li>\n\n\n\n<li>Pandolfo, M.<\/li>\n\n\n\n<li>Puccio, H.<\/li>\n\n\n\n<li>Ritschel, P.<\/li>\n<\/ul>\n\n\n\n<h6 class=\"wp-block-heading has-secondary-color has-text-color has-link-color wp-elements-6e67324cfad4a0d53d1e0a96cffbfda5\">Contact<\/h6>\n\n\n\n<h2 class=\"wp-block-heading\">Contactgegevens<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<div class=\"wp-block-group has-tertiary-background-color has-background has-global-padding is-layout-constrained wp-container-core-group-is-layout-6626b6cf wp-block-group-is-layout-constrained\" style=\"border-radius:5px;padding-top:var(--wp--preset--spacing--large);padding-right:var(--wp--preset--spacing--large);padding-bottom:var(--wp--preset--spacing--large);padding-left:var(--wp--preset--spacing--large)\">\n<div class=\"wp-block-group is-content-justification-space-between is-layout-flex wp-container-core-group-is-layout-b4f48f62 wp-block-group-is-layout-flex\">\n<h4 class=\"wp-block-heading has-main-accent-color has-text-color\">Contactgegevens<\/h4>\n<\/div>\n\n\n\n<div class=\"wp-block-group has-global-padding is-layout-constrained wp-block-group-is-layout-constrained\">\n<hr class=\"wp-block-separator has-text-color has-primary-color has-alpha-channel-opacity has-primary-background-color has-background is-style-separator-dotted\"\/>\n\n\n\n<div class=\"wp-block-group has-global-padding is-layout-constrained wp-container-core-group-is-layout-21658a27 wp-block-group-is-layout-constrained\">\n<p class=\"has-main-accent-color has-text-color wp-block-paragraph\">Email<\/p>\n\n\n\n<p class=\"has-main-color has-text-color wp-block-paragraph\">fara.europe@curefa.org<\/p>\n<\/div>\n\n\n\n<hr class=\"wp-block-separator has-text-color has-primary-color has-alpha-channel-opacity has-primary-background-color has-background is-style-separator-dotted\"\/>\n\n\n\n<div class=\"wp-block-group has-global-padding is-layout-constrained wp-container-core-group-is-layout-21658a27 wp-block-group-is-layout-constrained\">\n<p class=\"has-main-accent-color has-text-color wp-block-paragraph\">Telefoon<\/p>\n\n\n\n<p class=\"has-main-color has-text-color wp-block-paragraph\">+31 97 010267090<\/p>\n<\/div>\n\n\n\n<hr class=\"wp-block-separator has-text-color has-primary-color has-alpha-channel-opacity has-primary-background-color has-background is-style-separator-dotted\"\/>\n\n\n\n<div class=\"wp-block-group has-global-padding is-layout-constrained wp-container-core-group-is-layout-21658a27 wp-block-group-is-layout-constrained\">\n<p class=\"has-main-accent-color has-text-color wp-block-paragraph\">Postadres<\/p>\n\n\n\n<p class=\"has-main-color has-text-color wp-block-paragraph\">Stichting Friedreich&#8217;s Ataxia Research Alliance EUROPE<br>Jachthavenweg 111, 1081KM Amsterdam<\/p>\n<\/div>\n\n\n\n<hr class=\"wp-block-separator has-text-color has-primary-color has-alpha-channel-opacity has-primary-background-color has-background is-style-separator-dotted\"\/>\n\n\n\n<div class=\"wp-block-group has-global-padding is-layout-constrained wp-container-core-group-is-layout-21658a27 wp-block-group-is-layout-constrained\">\n<p class=\"has-main-accent-color has-text-color wp-block-paragraph\">Kamer van Koophandel-Nummer (KVK) <\/p>\n\n\n\n<p class=\"has-main-color has-text-color wp-block-paragraph\">90213602 <\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-group has-global-padding is-layout-constrained wp-container-core-group-is-layout-21658a27 wp-block-group-is-layout-constrained\">\n<p class=\"has-main-accent-color has-text-color wp-block-paragraph\">RSIN\/Fiscaal Nummer<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">865244042<\/p>\n<\/div>\n\n\n\n<hr class=\"wp-block-separator has-text-color has-primary-color has-alpha-channel-opacity has-primary-background-color has-background is-style-separator-dotted\"\/>\n<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>OUR MISSION FARA Europe Mission FARA Europe\u2019s mission is to treat and cure Friedreich&#8217;s ataxia (FA) by marshaling and focusing European and global resources and relationships, by advancing treatments that will slow, stop and reverse FA, by empowering researchers and persons living with FA and by facilitating clinical research across the globe. Achieving this mission [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-8","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/curefa-europe.org\/nl\/wp-json\/wp\/v2\/pages\/8","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/curefa-europe.org\/nl\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/curefa-europe.org\/nl\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/curefa-europe.org\/nl\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/curefa-europe.org\/nl\/wp-json\/wp\/v2\/comments?post=8"}],"version-history":[{"count":0,"href":"https:\/\/curefa-europe.org\/nl\/wp-json\/wp\/v2\/pages\/8\/revisions"}],"wp:attachment":[{"href":"https:\/\/curefa-europe.org\/nl\/wp-json\/wp\/v2\/media?parent=8"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}