{"id":1001,"date":"2025-10-18T20:28:39","date_gmt":"2025-10-18T18:28:39","guid":{"rendered":"https:\/\/www.itpptibelgium.be\/qui-sommes-nous\/"},"modified":"2026-09-23T17:44:08","modified_gmt":"2026-09-23T15:44:08","slug":"qui-sommes-nous","status":"publish","type":"page","link":"https:\/\/www.itpptibelgium.be\/fr\/itp-pti-belgium\/qui-sommes-nous\/","title":{"rendered":"Qui sommes-nous ?"},"content":{"rendered":"\n<p class=\"has--font-size wp-block-paragraph\">PTI-PTI Belgium ASBL est l&rsquo;organisation belge de patients pour les personnes atteintes de thrombop\u00e9nie immune primaire (PTI), une maladie auto-immune rare dans laquelle le syst\u00e8me immunitaire d\u00e9truit ses propres plaquettes.<br><br>Comme il n&rsquo;existait jusqu&rsquo;\u00e0 r\u00e9cemment aucune association en Belgique qui d\u00e9fendait sp\u00e9cifiquement les int\u00e9r\u00eats des patients atteints de PTI, nous avons cr\u00e9\u00e9 une association de fait fin 2022.<br><br>Depuis mai 2025, nous sommes officiellement reconnue comme asbl.<br><br>Nous voulons cr\u00e9er un lieu s\u00fbr o\u00f9 les patients, les membres de leur famille et les soignants trouvent information, soutien et compr\u00e9hension.<\/p>\n\n\n\n<h4 class=\"wp-block-heading has--font-size\"><strong>Notre origine<\/strong><\/h4>\n\n\n<style>.wp-block-kadence-advancedheading.kt-adv-heading1001_038569-17, .wp-block-kadence-advancedheading.kt-adv-heading1001_038569-17[data-kb-block=\"kb-adv-heading1001_038569-17\"]{font-style:normal;}.wp-block-kadence-advancedheading.kt-adv-heading1001_038569-17 mark.kt-highlight, .wp-block-kadence-advancedheading.kt-adv-heading1001_038569-17[data-kb-block=\"kb-adv-heading1001_038569-17\"] mark.kt-highlight{font-style:normal;color:#f76a0c;-webkit-box-decoration-break:clone;box-decoration-break:clone;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;}.wp-block-kadence-advancedheading.kt-adv-heading1001_038569-17 img.kb-inline-image, .wp-block-kadence-advancedheading.kt-adv-heading1001_038569-17[data-kb-block=\"kb-adv-heading1001_038569-17\"] img.kb-inline-image{width:150px;vertical-align:baseline;}<\/style>\n<p class=\"kt-adv-heading1001_038569-17 wp-block-kadence-advancedheading\" data-kb-block=\"kb-adv-heading1001_038569-17\">L&rsquo;association est n\u00e9e de la motivation d&rsquo;une patiente qui, depuis 2020, \u00e9tablissait des contacts avec diverses entreprises pharmaceutiques pour rendre le patient derri\u00e8re la maladie plus visible. Les entreprises la contactaient parce qu&rsquo;elle parlait d\u00e9j\u00e0 souvent de la maladie sur les r\u00e9seaux sociaux et des difficult\u00e9s auxquelles vous vous heurtez en tant que patient. Elles voulaient savoir qui \u00e9tait la personne derri\u00e8re leurs recherches.<br><br>Elle voulait montrer ce que signifie vivre avec la PTI : la recherche d&rsquo;un diagnostic, l&rsquo;impact des traitements et l&rsquo;ignorance qui r\u00e8gne souvent autour de cette affection rare. Le r\u00e9seau s&rsquo;est rapidement \u00e9tendu gr\u00e2ce \u00e0 des participations \u00e0 des symposiums, des congr\u00e8s, des tables de patients et des consultations avec des experts m\u00e9dicaux.<br><br>Ces contacts ont men\u00e9 \u00e0 la prise de conscience qu&rsquo;il existait aussi en Belgique un besoin de contact entre personnes partageant le m\u00eame sort.<br><br>En avril 2022 a suivi l&rsquo;appel \u00e0 cr\u00e9er une association belge de patients PTI. Dans les mois qui ont suivi est n\u00e9e l&rsquo;association de fait PTI-PTI Belgium.<br>Une page Facebook ouverte a \u00e9t\u00e9 cr\u00e9\u00e9e, ainsi qu&rsquo;un groupe ferm\u00e9 uniquement pour les patients et leurs proches.<br><br>Pour ancrer juridiquement l&rsquo;association, PTI-PTI Belgium asbl a \u00e9t\u00e9 officiellement cr\u00e9\u00e9e le 15 mai 2025.<\/p>\n\n\n\n<h5 class=\"wp-block-heading has--font-size\"><strong>Conseil d&rsquo;administration<\/strong><\/h5>\n\n\n<style>.wp-block-kadence-advancedheading.kt-adv-heading1001_857f59-d2, .wp-block-kadence-advancedheading.kt-adv-heading1001_857f59-d2[data-kb-block=\"kb-adv-heading1001_857f59-d2\"]{font-style:normal;}.wp-block-kadence-advancedheading.kt-adv-heading1001_857f59-d2 mark.kt-highlight, .wp-block-kadence-advancedheading.kt-adv-heading1001_857f59-d2[data-kb-block=\"kb-adv-heading1001_857f59-d2\"] mark.kt-highlight{font-style:normal;color:#f76a0c;-webkit-box-decoration-break:clone;box-decoration-break:clone;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;}.wp-block-kadence-advancedheading.kt-adv-heading1001_857f59-d2 img.kb-inline-image, .wp-block-kadence-advancedheading.kt-adv-heading1001_857f59-d2[data-kb-block=\"kb-adv-heading1001_857f59-d2\"] img.kb-inline-image{width:150px;vertical-align:baseline;}<\/style>\n<p class=\"kt-adv-heading1001_857f59-d2 wp-block-kadence-advancedheading\" data-kb-block=\"kb-adv-heading1001_857f59-d2\">Le conseil d&rsquo;administration se compose de :<br>Dina Courant (pr\u00e9sidente)<br>Claudia Binon (secr\u00e9taire)<br>Jan Verroken (tr\u00e9sorier)<br>Sofie Bovin (membre du conseil d&rsquo;administration)<br>Leen Bovin (membre du conseil d&rsquo;administration)<\/p>\n\n\n<style>.wp-block-kadence-advancedheading.kt-adv-heading1001_cbda84-0f, .wp-block-kadence-advancedheading.kt-adv-heading1001_cbda84-0f[data-kb-block=\"kb-adv-heading1001_cbda84-0f\"]{font-style:normal;}.wp-block-kadence-advancedheading.kt-adv-heading1001_cbda84-0f mark.kt-highlight, .wp-block-kadence-advancedheading.kt-adv-heading1001_cbda84-0f[data-kb-block=\"kb-adv-heading1001_cbda84-0f\"] mark.kt-highlight{font-style:normal;color:#f76a0c;-webkit-box-decoration-break:clone;box-decoration-break:clone;padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;}.wp-block-kadence-advancedheading.kt-adv-heading1001_cbda84-0f img.kb-inline-image, .wp-block-kadence-advancedheading.kt-adv-heading1001_cbda84-0f[data-kb-block=\"kb-adv-heading1001_cbda84-0f\"] img.kb-inline-image{width:150px;vertical-align:baseline;}<\/style>\n<p class=\"kt-adv-heading1001_cbda84-0f wp-block-kadence-advancedheading\" data-kb-block=\"kb-adv-heading1001_cbda84-0f\">Ensemble, et avec l&rsquo;aide de quelques sympathisants, ils s&rsquo;engagent \u00e0 ancrer solidement l&rsquo;association et \u00e0 la faire conna\u00eetre, et de cette mani\u00e8re \u00e0 connecter, informer et soutenir les patients. <br><\/p>\n","protected":false},"excerpt":{"rendered":"<p>PTI-PTI Belgium ASBL est l&rsquo;organisation belge de patients pour les personnes atteintes de thrombop\u00e9nie immune primaire (PTI), une maladie auto-immune rare dans laquelle le syst\u00e8me immunitaire d\u00e9truit ses propres plaquettes&#8230;.<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":1054,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"_kadence_starter_templates_imported_post":false,"_kad_post_transparent":"","_kad_post_title":"","_kad_post_layout":"","_kad_post_sidebar_id":"","_kad_post_content_style":"","_kad_post_vertical_padding":"","_kad_post_feature":"","_kad_post_feature_position":"","_kad_post_header":false,"_kad_post_footer":false,"_kad_post_classname":"","footnotes":""},"class_list":["post-1001","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.itpptibelgium.be\/fr\/wp-json\/wp\/v2\/pages\/1001","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.itpptibelgium.be\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.itpptibelgium.be\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.itpptibelgium.be\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.itpptibelgium.be\/fr\/wp-json\/wp\/v2\/comments?post=1001"}],"version-history":[{"count":2,"href":"https:\/\/www.itpptibelgium.be\/fr\/wp-json\/wp\/v2\/pages\/1001\/revisions"}],"predecessor-version":[{"id":2726,"href":"https:\/\/www.itpptibelgium.be\/fr\/wp-json\/wp\/v2\/pages\/1001\/revisions\/2726"}],"up":[{"embeddable":true,"href":"https:\/\/www.itpptibelgium.be\/fr\/wp-json\/wp\/v2\/pages\/1054"}],"wp:attachment":[{"href":"https:\/\/www.itpptibelgium.be\/fr\/wp-json\/wp\/v2\/media?parent=1001"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}