{"id":3342,"date":"2019-12-27T14:48:00","date_gmt":"2019-12-27T20:48:00","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3342"},"modified":"2021-02-19T18:34:05","modified_gmt":"2021-02-19T18:34:05","slug":"organization-cure-vcp","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/","title":{"rendered":"ORGANISATION : Cure VCP Disease, Inc."},"content":{"rendered":"
\n
\"\"<\/figure>\n<\/div>\n

NOM DE L'ORGANISATION<\/strong>: Cure VCP Disease, Inc.<\/p>\n

SITE WEB :<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0https:\/\/www.curevcp.org<\/a><\/p>\n

FACEBOOK :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> https:\/\/www.facebook.com\/curevcpdisease\/<\/a><\/p>\n

TWITTER :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> @LostTexanInGA<\/p>\n

QUEL EST LE SOUS-TYPE DE LGMD SUR LEQUEL VOTRE ORGANISATION SE CONCENTRE :\u00a0 <\/strong>\u00a0<\/p>\n

Les maladies \u00e0 PCV et plus particuli\u00e8rement la myopathie \u00e0 corps inclusif associ\u00e9e \u00e0 la maladie osseuse de Paget et \u00e0 la d\u00e9mence frontotemporale (IBMPFD).\u00a0<\/p>\n

SI VOUS VOUS CONCENTREZ SUR UN SOUS-TYPE, EXISTE-T-IL UN REGISTRE ET COMMENT LES PATIENTS PEUVENT-ILS S'Y INSCRIRE ?<\/strong><\/p>\n

https:\/\/www.curevcp.org\/patient-registry<\/a><\/p>\n

Votre organisation est-elle \u00e0 but non lucratif ? Si oui, de quel type :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong><\/p>\n

\u00a0 Oui, nous sommes une organisation publique \u00e0 but non lucratif (501(c)(3)).<\/p>\n

CE QUI A INSPIR\u00c9 LA CR\u00c9ATION DE VOTRE ORGANISATION<\/strong>:<\/p>\n

\u00a0Il n'existait aucune organisation formelle pour organiser et sensibiliser les patients et les chercheurs aux maladies du PCV. Je suis moi-m\u00eame une patiente et j'ai perdu ma m\u00e8re \u00e0 cause de la maladie. J'ai senti que je ne pouvais pas rester les bras crois\u00e9s \u00e0 attendre et \u00e0 esp\u00e9rer que les choses se passent dans la communaut\u00e9 des chercheurs. En tant que population de patients, nous devions participer activement pour obtenir des r\u00e9sultats positifs, mais surtout pour identifier la population de patients.\u00a0<\/p>\n

QUELLE EST LA MISSION DE VOTRE ORGANISATION :<\/strong><\/p>\n

Cure VCP Disease, Inc. a \u00e9t\u00e9 cr\u00e9\u00e9e pour encourager les efforts visant \u00e0 gu\u00e9rir les maladies li\u00e9es \u00e0 des mutations du g\u00e8ne Valosin Containing Protein. Il s'agit notamment de la myopathie \u00e0 corps inclusif associ\u00e9e \u00e0 la maladie osseuse de Paget et \u00e0 la d\u00e9mence frontotemporale (IBMPFD). Notre objectif est de sensibiliser les m\u00e9decins, les chercheurs, les investisseurs, les patients, les soignants et le grand public aux maladies li\u00e9es \u00e0 la prot\u00e9ine contenant de la valosine.<\/p>\n

QUELS SONT LES SERVICES OFFERTS PAR VOTRE ORGANISATION :<\/strong><\/p>\n

\u00a0Nous tenons un registre mondial des patients atteints de la maladie de VCP. Nous donnons de l'espoir et de l'\u00e9ducation \u00e0 notre population de patients par le biais de conf\u00e9rences, de bulletins d'information \u00e9lectroniques, de ressources en ligne et de webinaires.<\/p>\n

DE QUOI VOTRE ORGANISATION EST-ELLE LA PLUS FI\u00c8RE ?<\/strong><\/p>\n

\u00a0Nous avons d\u00e9marr\u00e9 en janvier 2018 et, en avril 2019, nous avons organis\u00e9 la conf\u00e9rence inaugurale des patients et des soignants sur la maladie de VCP. Une soixantaine de patients, d'aidants et de chercheurs \u00e9taient pr\u00e9sents. Toutes les sessions enregistr\u00e9es sont disponibles sur notre cha\u00eene YouTube Cure VCP Disease.<\/p>\n

QUE VOULEZ-VOUS QUE LE MONDE SACHE \u00c0 PROPOS DE VOTRE ORGANISATION ?<\/strong>:<\/p>\n

\u00a0Beaucoup de nos patients re\u00e7oivent un diagnostic erron\u00e9 de LGMD ou de myosite \u00e0 corps inclus. La recherche d'un diagnostic correct peut \u00eatre stressante pour de nombreux patients atteints de maladies neuromusculaires. Notre objectif est de nous associer \u00e0 toutes les organisations de lutte contre les maladies neuromusculaires de l'adulte pour promouvoir la sensibilisation, l'\u00e9ducation et les meilleures pratiques. Nous sommes tous confront\u00e9s aux m\u00eames d\u00e9fis li\u00e9s \u00e0 nos maladies et, bien que la science de nos maladies soit diff\u00e9rente, nous devons tous \u00eatre dans le m\u00eame bateau.<\/p>\n

COMMENT LES GENS PEUVENT-ILS S'IMPLIQUER DANS LE SOUTIEN DE VOTRE ORGANISATION :<\/strong><\/p>\n

\u00a0Nous essayons de cr\u00e9er un programme d'ambassadeurs pour atteindre les patients, les soignants et la communaut\u00e9 scientifique. Nous ne connaissons pas la pr\u00e9valence des maladies VCP et il est essentiel d'identifier davantage de patients pour comprendre l'impact global.<\/p>\n

QUEL EST LE MEILLEUR MOYEN DE CONTACTER VOTRE ORGANISATION :<\/strong><\/p>\n

Site web, groupe Facebook ou courriel<\/p>\n

Y A-T-IL AUTRE CHOSE QUE VOUS AIMERIEZ AJOUTER ?<\/strong><\/p>\n

\u00a0La question cl\u00e9 pour diff\u00e9rencier la maladie VCP d'une \u00e9ventuelle mutation LGMD est la question de l'h\u00e9r\u00e9dit\u00e9 : \"D'autres membres de la famille pr\u00e9sentent-ils une faiblesse musculaire, une maladie osseuse et\/ou une d\u00e9mence ?\" La maladie de VCP est une maladie autosomique dominante qui se transmet le plus souvent au sein de la famille et peut se manifester par diff\u00e9rents sympt\u00f4mes. Ma m\u00e8re, ma tante et mes deux oncles (4 de mes 6 fr\u00e8res et s\u0153urs) avaient ou ont la maladie de VCP. Comme je suis porteuse de la mutation, il y a une chance sur deux que ma prog\u00e9niture soit affect\u00e9e. Le g\u00e8ne VCP est d\u00e9sormais inclus dans la plupart des panels de tests g\u00e9n\u00e9tiques pour les maladies neuromusculaires.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4384,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-3342","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Cure VCP Disease, Inc. - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/fr\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Cure VCP Disease, Inc. - 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