{"id":8775,"date":"2023-11-17T15:13:32","date_gmt":"2023-11-17T15:13:32","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=8775"},"modified":"2023-11-17T15:24:26","modified_gmt":"2023-11-17T15:24:26","slug":"recapitulation-de-la-conference-des-familles-sur-les-tumeurs-cerebrales-de-lhypophyse-2023-plaidoyer-connexion-et-croissance","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2023\/11\/17\/recap-pituitary-brain-tumor-family-conference-2023-advocacy-connection-and-growth\/","title":{"rendered":"R\u00e9capitulation : Conf\u00e9rence de la famille de la tumeur c\u00e9r\u00e9brale hypophysaire 2023 - D\u00e9fense, connexion et croissance"},"content":{"rendered":"

Vue d'ensemble<\/strong><\/h3>\n\n\n\n

Au c\u0153ur de Philadelphie, la Raymond A. Wood Foundation a accueilli la 5e conf\u00e9rence annuelle des familles sur les tumeurs c\u00e9r\u00e9brales hypophysaires (Pituitary Brain Tumor Family Conference 2023) \u00e0 l'h\u00f4pital pour enfants de Philadelphie, incarnant un engagement commun en faveur de la d\u00e9fense, de la connexion et de l'\u00e9panouissement personnel. Des soignants, des survivants et des experts se sont r\u00e9unis pour explorer les derni\u00e8res connaissances sur les troubles neuroendocriniens pouvant r\u00e9sulter de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires, cr\u00e9ant ainsi une vibrante tapisserie d'exp\u00e9riences partag\u00e9es. Il s'agissait du premier \u00e9v\u00e9nement en personne depuis 2019.<\/p>\n\n\n\n

\"Une<\/figure>\n\n\n\n

<\/p>\n\n\n\n

Pr\u00e9sentations et orateurs<\/strong><\/h3>\n\n\n\n

La conf\u00e9rence a d\u00e9but\u00e9 par un accueil chaleureux du Dr Craig Alter de l'h\u00f4pital pour enfants de Philadelphie et d'Amy Wood de la Fondation Raymond A. Wood. Le Dr Soma Sengupta, \u00e9minente personnalit\u00e9 de l'\u00e9cole de m\u00e9decine de l'UNC, a donn\u00e9 le ton avec un expos\u00e9 sur la m\u00e9decine int\u00e9grative, offrant une perspective unique du point de vue des patients et des soignants. Le Dr Craig Alter a pr\u00e9sent\u00e9 aux participants un tour d'horizon complet des hormones dans \"Pituitary 101\", tandis que le Dr Shana McCormack a partag\u00e9 les derni\u00e8res d\u00e9couvertes en mati\u00e8re d'essais cliniques et de recherche. Marci Serota, di\u00e9t\u00e9ticienne, a parl\u00e9 de la gestion nutritionnelle de l'ob\u00e9sit\u00e9 hypothalamique. Le Dr Meredith E. MacGregor a abord\u00e9 les questions sociales, et le groupe d'experts sur le remplacement des hormones sexuelles, compos\u00e9 du Dr Chris Gibson et du Dr Iris Gutmark-Little, a fait la lumi\u00e8re sur cette partie du parcours du patient. La premi\u00e8re journ\u00e9e s'est achev\u00e9e par une d\u00e9monstration pratique dirig\u00e9e par le Dr Julia Crowley, offrant des aper\u00e7us pratiques sur l'administration de doses de st\u00e9ro\u00efdes en cas de stress, et par le groupe d'experts sur l'assurance qualit\u00e9 r\u00e9unissant les pr\u00e9sentateurs de la journ\u00e9e.<\/p>\n\n\n\n

Le deuxi\u00e8me jour, le Dr Nathalie Kayadjanian s'est pench\u00e9e sur \"Le pourquoi et le comment d'un registre de patients\", mettant en lumi\u00e8re l'importance de la collecte de donn\u00e9es compl\u00e8tes sur les patients. La matin\u00e9e s'est poursuivie avec un panel de survivants et d'aidants, qui a offert une plateforme de discussion ouverte sur les exp\u00e9riences des aidants et des patients, les priorit\u00e9s de la recherche et la gestion de l'\u00e9tat de sant\u00e9.<\/p>\n\n\n\n

\"Victoria<\/figure>\n\n\n\n

Valerie Crabtree, PhD, de l'h\u00f4pital de recherche pour enfants St. Jude, parle des d\u00e9fis et des approches en mati\u00e8re de sommeil.<\/em><\/p>\n\n\n\n

<\/p>\n\n\n\n

La restauration au service de la sant\u00e9 : Un menu adapt\u00e9 aux besoins des patients<\/strong><\/h3>\n\n\n\n

L'une des particularit\u00e9s de la conf\u00e9rence \u00e9tait un menu m\u00e9ticuleusement con\u00e7u pour r\u00e9pondre aux besoins alimentaires sp\u00e9cifiques des patients souffrant d'ob\u00e9sit\u00e9 hypothalamique. Cet effort culinaire a \u00e9t\u00e9 r\u00e9alis\u00e9 en accord avec les directives nutritionnelles expliqu\u00e9es par Marci Serota. Le menu proposait non seulement des options d\u00e9licieuses et nutritives, mais soulignait \u00e9galement l'engagement en faveur des soins holistiques. Les participants ayant des besoins alimentaires particuliers ont trouv\u00e9 du r\u00e9confort et de la satisfaction en sachant que leurs besoins nutritionnels \u00e9taient non seulement pris en compte, mais aussi consid\u00e9r\u00e9s comme prioritaires, ce qui a contribu\u00e9 \u00e0 faire de la conf\u00e9rence une exp\u00e9rience inclusive et positive.<\/p>\n\n\n\n

\"D\u00e9jeuner<\/figure>\n\n\n\n

Des repas adapt\u00e9s aux HO ont \u00e9t\u00e9 servis pendant le week-end.<\/em><\/p>\n\n\n\n

Faits marquants et enseignements<\/strong><\/h3>\n\n\n\n

La conf\u00e9rence a mis en valeur l'expertise d'orateurs renomm\u00e9s, offrant aux participants une plateforme pour entrer en contact avec des experts et entre eux. Des panels de questions-r\u00e9ponses approfondies et des d\u00e9monstrations pratiques ont enrichi l'exp\u00e9rience, tandis que les discussions sur la recherche sur l'ob\u00e9sit\u00e9 hypothalamique ont laiss\u00e9 entrevoir un avenir prometteur pour le traitement.<\/p>\n\n\n\n

Participants et mise en r\u00e9seau<\/strong><\/h3>\n\n\n\n

Soixante participants en personne, dont des participants internationaux, et 53 participants virtuels, dont des repr\u00e9sentants de la Raymond A. Wood Foundation (RAWF) et des sponsors tels que Rhythm Pharmaceuticals et LG Chem, ont cr\u00e9\u00e9 un environnement de travail dynamique. Une salle r\u00e9serv\u00e9e aux enfants proposait des activit\u00e9s telles que le yoga et l'artisanat, favorisant un sentiment de communaut\u00e9 parmi les jeunes survivants et les membres de leur famille.<\/p>\n\n\n\n

\"Groupe<\/figure>\n\n\n\n

Les survivants nouent des liens pendant la conf\u00e9rence.<\/em><\/p>\n\n\n\n

Sessions interactives et retour d'information<\/strong><\/h3>\n\n\n\n

Les s\u00e9ances de questions-r\u00e9ponses et le panel de survivants et de soignants ont permis de renforcer l'engagement des participants. Les participants ont fait part de leur souhait de disposer de plus de temps pour poser des questions, d'assister \u00e0 des pr\u00e9sentations sur les consid\u00e9rations li\u00e9es au traitement et ont sugg\u00e9r\u00e9 des s\u00e9ances en petits groupes en fonction des niveaux d'exp\u00e9rience et des groupes d'\u00e2ge.<\/p>\n\n\n\n

Implications futures<\/strong><\/h3>\n\n\n\n

Pour l'avenir, nous esp\u00e9rons une am\u00e9lioration des r\u00e9sultats des traitements et proposons une recherche plus cibl\u00e9e sur les questions psychosociales pour ce groupe de patients. Nous sommes optimistes quant aux progr\u00e8s r\u00e9alis\u00e9s dans le traitement de l'ob\u00e9sit\u00e9 hypothalamique, et l'\u00e9tablissement d'un registre de patients par RAWF offrira des possibilit\u00e9s accrues de recherche autour des priorit\u00e9s des patients. Nous pr\u00e9voyons d'organiser des conf\u00e9rences en personne tous les deux ans, afin d'assurer un soutien et une formation durables \u00e0 la communaut\u00e9 neuroendocrine en pleine expansion.<\/p>\n\n\n\n

La conf\u00e9rence souligne l'importance de la d\u00e9fense des int\u00e9r\u00eats, de la collaboration et de l'espoir, en tissant un r\u00e9cit de r\u00e9silience partag\u00e9e et de progr\u00e8s dans le domaine des tumeurs c\u00e9r\u00e9brales hypophysaires. Nous sommes reconnaissants \u00e0 nos sponsors d'avoir rendu cela possible, \u00e0 nos pr\u00e9sentateurs d'avoir partag\u00e9 leur expertise et leur temps, et \u00e0 notre communaut\u00e9 de patients de s'\u00eatre r\u00e9unie pour cet \u00e9v\u00e9nement.<\/p>\n\n\n\n

<\/p>\n\n\n\n

\n
\"Une<\/figure>\n\n\n\n
\"Survivant<\/figure>\n\n\n\n
\"Un<\/figure>\n\n\n\n
\"Une<\/figure>\n\n\n\n
\"Les<\/figure>\n\n\n\n
\"Les<\/figure>\n\n\n\n
\"\"<\/figure>\n<\/figure>\n\n\n\n
\n\n\n\nSoutenez notre travail ! Faites un don aujourd'hui.<\/a>","protected":false},"excerpt":{"rendered":"

Vue d'ensemble Au c\u0153ur de Philadelphie, la Fondation Raymond A. Wood a accueilli la 5\u00e8me ... Lire plus<\/a><\/p>","protected":false},"author":4,"featured_media":8779,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[40,8,30],"tags":[],"class_list":["post-8775","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-education","category-events","category-rawf-news","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nRecap: Pituitary Brain Tumor Family Conference 2023 - Advocacy, Connection, and Growth - Raymond A. 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