{"id":8986,"date":"2026-06-10T11:57:06","date_gmt":"2026-06-10T09:57:06","guid":{"rendered":"https:\/\/apaiser.org\/newsite\/?p=8986"},"modified":"2026-06-10T11:57:07","modified_gmt":"2026-06-10T09:57:07","slug":"congres-2026-de-lalliance-maladies-rares","status":"publish","type":"post","link":"https:\/\/apaiser.org\/newsite\/2026\/06\/10\/congres-2026-de-lalliance-maladies-rares\/","title":{"rendered":"Congr\u00e8s 2026 de l’Alliance Maladies Rares"},"content":{"rendered":"\n

Le congr\u00e8s 2026 de l’Alliance Maladies Rares, qui s’est tenu ces 4 et 5 juin derniers \u00e0 Charenton, \u00e9tait largement consacr\u00e9 \u00e0 des sujets de prospective, autour de l’innovation, de la place des associations de patients dans les parcours de vie et de soin et du renouvellement des g\u00e9n\u00e9rations dans les combats port\u00e9s pour les patients et leurs aidants.<\/p>\n\n\n\n

Apr\u00e8s un hommage \u00e0 Jacques Bernard, co-fondateur de l’Alliance qui nous a quitt\u00e9s cette ann\u00e9e, ce rendez-vous incontournable a r\u00e9uni l’ensemble des acteurs du r\u00e9seau autour de quatre temps forts, \u00e9voquant des sujets cruciaux pour l’avenir des patients :\u00a0<\/p>\n\n\n\n

L’innovation th\u00e9rapeutique & la g\u00e9nomique<\/strong> : David Genevi\u00e8ve, Chef du d\u00e9partement de m\u00e9decin g\u00e9n\u00e9tique au CHU de Montpellier et Xavier Nissan, directeur de recherche \u00e0 l’institut I-Stem ont pr\u00e9sent\u00e9 des perspectives fascinantes sur l’\u00e9volution de la m\u00e9decine g\u00e9nomique au cours des 10 prochaines ann\u00e9es, et l’avenir de l’usage des cellules souches dans le traitement de maladies rares.<\/p>\n\n\n\n

Le d\u00e9pistage personnalis\u00e9<\/strong>, de l’enfance \u00e0 l’\u00e2ge adulte, pour garantir un diagnostic plus rapide et \u00e9quitable partout en France.<\/p>\n\n\n\n

La prise en charge de demain<\/strong>, en pla\u00e7ant plus que jamais les associations de malades au c\u0153ur de la gouvernance et de la co-construction des parcours de vie.<\/p>\n\n\n\n

L’engagement des jeunes dans les associations maladies rares :<\/strong> comment susciter et valoriser l’implication de jeunes patients dans la vie et la gouvernance de nos associations ?<\/p>\n\n\n\n

Entre ateliers participatifs, assembl\u00e9e pl\u00e9ni\u00e8re et partages d’exp\u00e9riences, ces deux journ\u00e9es intenses renforcent notre d\u00e9termination collective. <\/p>\n\n\n

\n
\"\"<\/figure>\n<\/div>\n\n\n

APAISER S&C<\/strong> remercie Jean-Philippe Plan\u00e7on pour son mandat et son action \u00e0 la t\u00eate de l’Alliance Maladies Rares et f\u00e9licite C\u00e9cile Foujols-Gaussot, \u00e9lue nouvelle Pr\u00e9sidente de l’Alliance. Mado Gilanton, notre pr\u00e9sidente, continue quant \u00e0 elle avec fiert\u00e9 son mandat de membre du\u00a0Conseil National<\/strong> et r\u00e9affirme notre engagement dans les combats collectifs port\u00e9s par l’Alliance.<\/p>\n\n\n\n

Ensemble, continuons \u00e0 faire avancer la recherche, \u00e0 briser l’isolement et \u00e0 porter haut la voix des malades !<\/p>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

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