{"id":1441,"date":"2022-09-26T13:39:52","date_gmt":"2022-09-26T11:39:52","guid":{"rendered":"https:\/\/ph-vzw.be\/zeldzame-ziekten\/"},"modified":"2023-09-01T11:52:05","modified_gmt":"2023-09-01T09:52:05","slug":"maladie-rare","status":"publish","type":"page","link":"https:\/\/ph-vzw.be\/fr\/qu-est-ce-que-le-lhtp\/maladie-rare\/","title":{"rendered":"Maladie rare"},"content":{"rendered":"

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Maladie rare<\/h1>\n

On parle de maladie rare lorsqu’elle survient chez moins d’une personne sur 2000<\/strong>.<\/p>\n

Actuellement, il n’y a pas de registre central en Belgique et nous ne pouvons donc qu’estimer le nombre de cas dans notre pays. Selon les r\u00e9centes directives (2022) pour le diagnostic et le traitement de l’hypertension pulmonaire, on estime \u00e0 48-55 cas par million d’habitants l’hypertension art\u00e9rielle pulmonaire (HTAP) et \u00e0 26-38 cas par million d’habitants l’hypertension pulmonaire thromboembolique chronique (HTTPC).<\/p>\n

Notre association se concentre principalement sur ces formes rares d’hypertension pulmonaire<\/strong>, car elles pr\u00e9sentent des probl\u00e8mes sp\u00e9cifiques aux maladies rares.[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/6″][\/vc_column][vc_column width=\u00a0\u00bb1\/3″][vc_single_image image=\u00a0\u00bb2036″ img_size=\u00a0\u00bbfull\u00a0\u00bb alignment=\u00a0\u00bbcenter\u00a0\u00bb][\/vc_column][\/vc_row][\/vc_section][vc_section css=\u00a0\u00bb.vc_custom_1667805170323{margin-top: 32px !important;}\u00a0\u00bb][vc_row el_class=\u00a0\u00bbcontainer\u00a0\u00bb][vc_column][vc_column_text]<\/p>\n

Plus d’informations<\/h2>\n

[\/vc_column_text][\/vc_column][\/vc_row][vc_row equal_height=\u00a0\u00bbyes\u00a0\u00bb el_class=\u00a0\u00bbcontainer\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/3″ el_class=\u00a0\u00bbzeldzameZiekteBlok\u00a0\u00bb][vc_single_image image=\u00a0\u00bb561″ img_size=\u00a0\u00bbfull\u00a0\u00bb alignment=\u00a0\u00bbcenter\u00a0\u00bb][vc_column_text]<\/p>\n

RaDiOrg<\/a><\/h3>\n

Groupement d’int\u00e9r\u00eat belge pour les personnes atteintes de maladies rares.[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/3″ el_class=\u00a0\u00bbzeldzameZiekteBlok\u00a0\u00bb][vc_single_image image=\u00a0\u00bb2034″ img_size=\u00a0\u00bbfull\u00a0\u00bb alignment=\u00a0\u00bbcenter\u00a0\u00bb][vc_column_text]<\/p>\n

Fonds pour les maladies rares et les m\u00e9dicaments orphelins<\/a><\/h3>\n

Fonds de la Fondation Roi Baudouin visant \u00e0 promouvoir la connaissance des maladies rares et le d\u00e9veloppement et la disponibilit\u00e9 des m\u00e9dicaments orphelins.[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/3″ el_class=\u00a0\u00bbzeldzameZiekteBlok\u00a0\u00bb][vc_single_image image=\u00a0\u00bb563″ img_size=\u00a0\u00bbfull\u00a0\u00bb alignment=\u00a0\u00bbcenter\u00a0\u00bb][vc_column_text]<\/p>\n

EURORDIS<\/a><\/h3>\n

Groupement europ\u00e9en d’int\u00e9r\u00eat pour les personnes atteintes de maladies rares.[\/vc_column_text][\/vc_column][\/vc_row][vc_row equal_height=\u00a0\u00bbyes\u00a0\u00bb el_class=\u00a0\u00bbcontainer\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/3″ el_class=\u00a0\u00bbzeldzameZiekteBlok\u00a0\u00bb][vc_single_image image=\u00a0\u00bb566″ img_size=\u00a0\u00bbfull\u00a0\u00bb alignment=\u00a0\u00bbcenter\u00a0\u00bb][vc_column_text]<\/p>\n

Orphanet<\/a><\/h3>\n

Portail pour les maladies rares et les m\u00e9dicaments orphelins.[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/3″ el_class=\u00a0\u00bbzeldzameZiekteBlok\u00a0\u00bb][vc_single_image image=\u00a0\u00bb564″ img_size=\u00a0\u00bbfull\u00a0\u00bb alignment=\u00a0\u00bbcenter\u00a0\u00bb][vc_column_text]<\/p>\n

Rare Disease Day<\/a><\/h3>\n

Chaque ann\u00e9e, le dernier jour de f\u00e9vrier, l’attention est port\u00e9e sur les patients atteints de maladies rares et leurs probl\u00e8mes sp\u00e9cifiques.[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/3″][\/vc_column][\/vc_row][\/vc_section][vc_section css=\u00a0\u00bb.vc_custom_1666180208375{padding-top: 100px !important;padding-bottom: 100px !important;}\u00a0\u00bb][vc_row el_class=\u00a0\u00bbcontainer\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/3″][vc_column_text el_class=\u00a0\u00bbborderButton\u00a0\u00bb]<\/p>\n

Sympt\u00f4mes<\/a><\/p>\n

[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/3″][vc_column_text el_class=\u00a0\u00bbborderButton\u00a0\u00bb]<\/p>\n

Causes<\/a><\/p>\n

[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/3″][vc_column_text el_class=\u00a0\u00bbborderButton\u00a0\u00bb]<\/p>\n

Diagnostic<\/a><\/p>\n

[\/vc_column_text][\/vc_column][\/vc_row][vc_row el_class=\u00a0\u00bbcontainer\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/3″][vc_column_text el_class=\u00a0\u00bbborderButton\u00a0\u00bb]<\/p>\n

Traitement<\/a><\/p>\n

[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/3″][vc_column_text el_class=\u00a0\u00bbborderButton\u00a0\u00bb]<\/p>\n

Centres<\/a><\/p>\n

[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/3″][vc_column_text el_class=\u00a0\u00bbborderButton active\u00a0\u00bb]<\/p>\n

Maladie rare<\/a><\/p>\n

[\/vc_column_text][\/vc_column][\/vc_row][\/vc_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

[vc_section css=\u00a0\u00bb.vc_custom_1665381596718{margin-top: 50px !important;}\u00a0\u00bb][vc_row equal_height=\u00a0\u00bbyes\u00a0\u00bb content_placement=\u00a0\u00bbmiddle\u00a0\u00bb el_class=\u00a0\u00bbcontainer\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/2″][vc_column_text] Maladie rare On parle de maladie rare lorsqu’elle survient chez moins d’une personne sur 2000. Actuellement, il n’y a pas de registre central en Belgique et nous ne pouvons donc qu’estimer le nombre de cas dans notre pays. Selon les r\u00e9centes directives (2022) pour le diagnostic et […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":1453,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"inline_featured_image":false,"footnotes":""},"categories":[],"tags":[],"class_list":["post-1441","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nMaladie rare - Pulmonale hypertentie vzw<\/title>\n<meta name=\"description\" content=\"L'hypertension art\u00e9rielle pulmonaire et l'hypertension pulmonaire thromboembolique chronique sont formes rares d'hypertension pulmonaire.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ph-vzw.be\/fr\/qu-est-ce-que-le-lhtp\/maladie-rare\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Maladie rare - 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