{"id":5243,"date":"2023-05-16T18:26:54","date_gmt":"2023-05-16T18:26:54","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/?page_id=5243"},"modified":"2026-06-08T14:08:51","modified_gmt":"2026-06-08T14:08:51","slug":"nos-objectifs","status":"publish","type":"page","link":"https:\/\/www.rawoodfoundation.org\/fr\/our-goals\/","title":{"rendered":"Patient\/Family Support Programs"},"content":{"rendered":"
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Gestion des soins \u00e0 domicile de l'Adipsic AVP-D pour les patients atteints de tumeurs c\u00e9r\u00e9brales p\u00e9diatriques<\/h3>\n\n\n\n

<\/path><\/svg><\/span>Contactez-nous pour une demande<\/a><\/span><\/p>\n<\/div>\n\n\n\n

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Le d\u00e9ficit en arginine vasopressine (AVP-D, diab\u00e8te insipide) est une maladie rare et chronique dans laquelle l'hypothalamus ne produit pas de vasopressine, \u00e9galement connue sous le nom d'hormone antidiur\u00e9tique (ADH), ce qui peut entra\u00eener des probl\u00e8mes d'\u00e9quilibre des fluides corporels et des taux de sodium dans le sang trop \u00e9lev\u00e9s entra\u00eenant une hyponatr\u00e9mie (trop de fluides dans le corps) ou une hypernatr\u00e9mie (trop peu de fluides dans le corps). L'une ou l'autre de ces affections peut provoquer des crises d\u00e9bilitantes, un coma ou \u00eatre fatale. <\/p>\n\n\n\n

L'AVP-D adipsique signifie que le patient n'a pas un m\u00e9canisme de soif intact. Les patients qui ont \u00e9t\u00e9 trait\u00e9s pour des tumeurs c\u00e9r\u00e9brales ayant entra\u00een\u00e9 des l\u00e9sions hypothalamiques peuvent \u00eatre confront\u00e9s \u00e0 ce probl\u00e8me, ce qui rend la prise en charge de l'AVP-D plus difficile. La th\u00e9rapie hormonale de remplacement sous forme de desmopressine (DDAVP) peut \u00eatre peu fiable au jour le jour pour certains patients.<\/p>\n\n\n\n

L'\u00e9valuation du sodium chez les patients p\u00e9diatriques est particuli\u00e8rement difficile. Il n'existe actuellement aucun appareil de mesure du sodium qui puisse \u00eatre test\u00e9 \u00e0 domicile. Les patients sont soumis \u00e0 des visites de laboratoire, parfois plusieurs fois par semaine. En dehors des heures de travail, lorsque les laboratoires sont ferm\u00e9s, les patients doivent \u00eatre test\u00e9s dans les salles d'urgence et sont admis si leur taux de sodium est hors norme. Les prises de sang se font par voie veineuse, ce qui est difficile pour les enfants. Les patients atteints de diab\u00e8te insipide central adipeux devront \u00eatre hospitalis\u00e9s plusieurs fois par an.<\/p>\n\n\n\n

Les analyseurs de sang portatifs de qualit\u00e9 hospitali\u00e8re sont la seule option dont disposent les soignants pour d\u00e9terminer les taux de sodium \u00e0 domicile. Ils fournissent des r\u00e9sultats pr\u00e9cis en laboratoire en 5 minutes avec une piq\u00fbre au doigt et 10 \u00e0 20 gouttes de sang. Ces appareils ne sont pas approuv\u00e9s par la FDA pour une utilisation \u00e0 domicile, sont co\u00fbteux et ne sont pas couverts par les assurances. Dans le cadre d'un usage m\u00e9dical compassionnel et avec les conseils d'un m\u00e9decin, la Raymond A. Wood Foundation (RAWF) a fourni \u00e0 30 patients p\u00e9diatriques et \u00e0 leurs familles des analyseurs de sang portables ainsi que des fournitures. La RAWF a \u00e9galement sensibilis\u00e9 les endocrinologues p\u00e9diatriques \u00e0 l'efficacit\u00e9 de ces appareils dans la gestion du sodium.<\/p>\n<\/div>\n<\/div>\n\n\n\n

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Conf\u00e9rence bisannuelle sur les tumeurs c\u00e9r\u00e9brales hypophysaires<\/h3>\n\n\n\n

<\/path><\/svg><\/span>Inscription et information<\/span><\/p>\n<\/div>\n\n\n\n

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The Raymond A. Wood Foundation (RAWF) along with the Children\u2019s Hospital of Philadelphia (CHOP) neuroendocrine clinic hosts a bi-annual conference on medical, educational and social issues faced by hypothalamic-pituitary brain tumor survivors. <\/p>\n\n\n\n

Cet \u00e9v\u00e9nement rassemble des individus, des soignants et des experts en soins de sant\u00e9, tous d\u00e9di\u00e9s \u00e0 l'am\u00e9lioration de la vie des personnes affect\u00e9es par diverses conditions m\u00e9dicales caus\u00e9es par des tumeurs c\u00e9r\u00e9brales hypophysaires. Cette conf\u00e9rence offre une occasion unique d'engager des conversations significatives, de partager des exp\u00e9riences personnelles et de s'informer sur les derni\u00e8res avanc\u00e9es en mati\u00e8re de traitement et de soins. Des conf\u00e9renciers d'honneur perspicaces aux sessions interactives en petits groupes, les familles acqui\u00e8rent des connaissances inestimables sur la gestion de l'apr\u00e8s-diagnostic et de l'apr\u00e8s-traitement. <\/p>\n<\/div>\n<\/div>\n\n\n\n

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Groupes de soutien<\/h3>\n\n\n\n

<\/path><\/svg><\/span>Voir les \u00e9v\u00e9nements \u00e0 venir<\/a><\/span><\/p>\n<\/div>\n\n\n\n

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The Raymond A. Wood Foundation hosts monthly support groups for caregivers and survivors of hypothalamic-pituitary brain tumors. These virtual spaces are tailored to provide a safe haven to connect, share, and find solace amidst the challenges faced. Whether you are a survivors, or you’re caring for a family member, friend, or loved one, our online support groups offer a convenient platform to exchange experiences, glean insights, and seek guidance from others who are walking a similar path. Engage in meaningful discussions, access valuable resources, and gain emotional sustenance from the comfort of your home. These digital gatherings transcend geographical boundaries, fostering a sense of belonging and camaraderie that reinforces the idea that you’re not alone in your journey. Join our online support groups<\/a> and discover the power of a united caregiver community, available at your fingertips.<\/p>\n<\/div>\n<\/div>\n\n\n\n

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Formation continue<\/h3>\n\n\n\n

<\/path><\/svg><\/span>Voir les \u00e9v\u00e9nements \u00e0 venir<\/a>ents<\/a><\/span><\/p>\n<\/div>\n\n\n\n

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La Fondation Raymond A. Wood estime que l'\u00e9ducation est le meilleur outil pour aider les patients et les soignants \u00e0 devenir leurs meilleurs d\u00e9fenseurs. <\/p>\n\n\n\n

RAWF propose des webinaires et des vid\u00e9os \u00e9ducatives sur des sujets d'int\u00e9r\u00eat allant de la recherche, des th\u00e9rapies \u00e9mergentes et des essais cliniques en cours, \u00e0 des plong\u00e9es approfondies dans la gestion des conditions r\u00e9sultant des tumeurs. Nous explorons des sujets tels que l'\u00e9ducation sp\u00e9cialis\u00e9e, les comp\u00e9tences sociales et les probl\u00e8mes de comportement.<\/p>\n\n\n\n

Les webinaires sont traduits dans 50 langues et nombre de nos vid\u00e9os \u00e9ducatives sont traduites en espagnol.<\/p>\n\n\n\n

All of our educational content is available on our video hub. Get access here.<\/a><\/p>\n<\/div>\n<\/div>\n\n\n\n

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Navigateur de patients en ligne<\/h3>\n<\/div>\n\n\n\n
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RAWF is currently working to develop a comprehensive online resource for information and to answer commonly asked questions about craniopharyngioma. Diagnosis of this tumor and management of care in the aftermath is daunting. There is currently no comprehensive resource that takes a deep dive into the common issues. This hub will be built on the WordPress platform and will provide an overview of treatment options, leading treating hospitals and physicians, current therapies including off-label options and prescribing doctors and a survivors\u2019 spotlight highlighting success stories of patients. The navigator is expected to launch by the end of 2024.<\/p>\n<\/div>\n<\/div>\n\n\n\n

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Soutenir nos programmes<\/h3>\n\n\n\n

Votre soutien peut avoir un impact durable sur notre mission, nous permettant de cr\u00e9er un changement positif et de transformer la vie de ces survivants de tumeurs c\u00e9r\u00e9brales. Rejoignez-nous pour d\u00e9fendre cette cause et, ensemble, nous pouvons ouvrir la voie \u00e0 un avenir meilleur, non seulement pour ces patients, mais aussi pour la recherche sur le cerveau et l'aide aux patients.<\/p>\n\n\n\n

<\/path><\/svg><\/span>Faire un don pour faire avancer notre mission<\/a><\/span><\/p>\n<\/div>\n<\/div>\n\n<\/div>","protected":false},"excerpt":{"rendered":"

At-Home Care Management of Adipsic AVP-D for Pediatric Brain Tumor Patients Contact us for an … Lire plus<\/a><\/p>","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":96,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":{"0":"post-5243","1":"page","2":"type-page","3":"status-publish","5":"no-featured-image-padding"},"acf":[],"yoast_head":"\nPatient\/Family Support Programs - Raymond A. Wood Foundation<\/title>\n<meta name=\"description\" content=\"Discover the current programs taking place in Raymond A. 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