{"id":3551,"date":"2023-01-11T13:29:50","date_gmt":"2023-01-11T13:29:50","guid":{"rendered":"https:\/\/cureclcn4.org\/nouveau-diagnostic\/"},"modified":"2023-01-11T13:29:50","modified_gmt":"2023-01-11T13:29:50","slug":"nouveau-diagnostic","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/fr\/nouveau-diagnostic\/","title":{"rendered":"Nouveau diagnostic"},"content":{"rendered":"

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Nouveau diagnostic – et ensuite ?<\/h1>\n

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Apr\u00e8s le diagnostic d’une maladie g\u00e9n\u00e9tique telle que la CLCN4, il est normal de ressentir toute une s\u00e9rie d’\u00e9motions et les parents trouvent souvent que l’adaptation \u00e0 un nouveau diagnostic est une p\u00e9riode tr\u00e8s difficile de leur vie. <\/p>\n

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Il est important de savoir que vous n’avez pas besoin de faire ce voyage seul. Vous pouvez vous mettre en relation avec d’autres parents d’enfants atteints de CLCN4 par le biais de notre groupe de soutien sur Facebook<\/a>, afin de partager des histoires et d’apprendre ce qui a aid\u00e9 d’autres enfants et leurs familles.<\/p>\n

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Ne marchez pas seul sur le chemin du CLCN4<\/h2>\n

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Il est \u00e9galement tr\u00e8s important de savoir que, m\u00eame si nous n’avons pas de rem\u00e8de pour le CLCN4 \u00e0 l’heure actuelle, il existe un soutien professionnel qui fera une \u00e9norme diff\u00e9rence pour la sant\u00e9, le d\u00e9veloppement et le bien-\u00eatre futurs de votre enfant. Les interventions pr\u00e9coces telles que l’orthophonie, la physioth\u00e9rapie et l’ergoth\u00e9rapie contribueront au d\u00e9veloppement de votre enfant et il est important de les mettre en place le plus t\u00f4t possible. Des th\u00e9rapies sont disponibles pour un grand nombre de complications, telles que l’\u00e9pilepsie et les probl\u00e8mes de sant\u00e9 mentale, qui pourraient se d\u00e9velopper. Le contr\u00f4le pr\u00e9coce de l’\u00e9pilepsie peut faire une \u00e9norme diff\u00e9rence pour le d\u00e9veloppement de votre enfant \u00e0 long terme. Pour obtenir les meilleurs conseils, il est important de trouver la bonne \u00e9quipe de m\u00e9decins et de sp\u00e9cialistes pour vous soutenir, vous et votre enfant : il peut s’agir de sp\u00e9cialistes tels qu’un neurologue, un ophtalmologue, un psychiatre et un orthop\u00e9diste, ainsi qu’un g\u00e9n\u00e9ticien clinique.
<\/strong><\/p>\n

Votre premi\u00e8re \u00e9tape<\/strong>
Dans un premier temps, contactez votre m\u00e9decin g\u00e9n\u00e9raliste ou votre p\u00e9diatre et donnez-lui le lien vers ce site Web et vers la page des professionnels de notre site<\/a> Human Disease Gene Webseries, o\u00f9 il pourra entrer directement en contact avec nos sp\u00e9cialistes cliniques et scientifiques, les docteurs Emma Palmer et Vera Kalscheuer.<\/span><\/p>\n

Vous trouverez de plus amples informations sur le soutien et les \u00e9tapes pratiques \u00e0 suivre apr\u00e8s un diagnostic g\u00e9n\u00e9tique affectant l’apprentissage des enfants ici<\/a> (Royaume-Uni) ou ici<\/a> \/ ici<\/a> (Australie) ou ici<\/a> (\u00c9tats-Unis).<\/p>\n

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Rejoignez notre registre de patients<\/h2>\n

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CureCLCN4 a \u00e9t\u00e9 cr\u00e9\u00e9 pour aider \u00e0 soutenir la recherche m\u00e9dicale afin d’obtenir de meilleurs traitements, un soutien et finalement des rem\u00e8des pour toutes les personnes atteintes de CLCN4. Une premi\u00e8re \u00e9tape cl\u00e9 pour nous aider \u00e0 atteindre ces objectifs sera de faire en sorte que le plus grand nombre possible de familles atteintes de CLCN4 dans le monde s’inscrivent \u00e0 notre registre de patients.<\/p>\n

Les registres de patients peuvent \u00eatre utiles aux personnes atteintes de maladies g\u00e9n\u00e9tiques rares comme la maladie CLCN4 pour trois raisons principales : <\/p>\n

1. Les registres de patients peuvent am\u00e9liorer les soins aux patients.<\/strong>
Nous mettons en place un registre num\u00e9rique des patients, moderne et s\u00e9curis\u00e9, o\u00f9 vous pourrez raconter votre histoire ou celle de votre enfant. Vous serez invit\u00e9 \u00e0 remplir des questionnaires qui recueillent syst\u00e9matiquement l’historique, le moment et l’impact des sympt\u00f4mes, ainsi que l’impact de tout traitement. Les chercheurs seront pr\u00eats \u00e0 analyser ces informations et \u00e0 les transmettre \u00e0 notre communaut\u00e9, pour nous aider \u00e0 apprendre ensemble quels traitements donnent les meilleurs r\u00e9sultats et dans quelles situations. Plus nous partagerons, plus nous disposerons d’informations pour aider nos enfants et ceux \u00e0 venir.<\/p>\n

2. Les registres amplifient votre voix.
<\/strong>Notre registre vous demandera \u00e9galement de donner votre point de vue sur des sujets importants vous concernant ou concernant votre enfant ! Par exemple, nous vous demandons votre avis sur les sympt\u00f4mes pour lesquels il est le plus important de trouver des traitements, ou sur les traitements existants sur lesquels vous souhaiteriez \u00eatre mieux inform\u00e9. Partager votre point de vue est extr\u00eamement puissant, car cela aide les organismes de financement de la recherche, les entreprises pharmaceutiques, les organismes de r\u00e9glementation et nos associations de patients \u00e0 apprendre comment r\u00e9pondre au mieux \u00e0 vos besoins. Il est de plus en plus courant d’exiger des chercheurs qu’ils \u00e9coutent et servent les int\u00e9r\u00eats du patient avant de pouvoir obtenir un financement ou l’approbation d’un m\u00e9dicament.<\/span><\/p>\n

3. Les registres am\u00e9liorent les chances de d\u00e9veloppement des m\u00e9dicaments.<\/strong>
Il n’y a pas moyen d’y \u00e9chapper, le d\u00e9veloppement de m\u00e9dicaments est difficile, long et co\u00fbteux. Les entreprises pharmaceutiques sont beaucoup plus attir\u00e9es par le d\u00e9veloppement de nouvelles th\u00e9rapies pour les communaut\u00e9s de patients atteints de maladies rares qui disposent d\u00e9j\u00e0 de registres de maladies rares contenant des donn\u00e9es utiles. Par exemple, nous vous demanderons si vous souhaitez recevoir des informations sur les nouveaux essais cliniques, car le fait de savoir cela permettra aux entreprises pharmaceutiques d’\u00e9conomiser beaucoup de temps et d’argent. Les donn\u00e9es et les statistiques issues de la recherche sur les registres sont n\u00e9cessaires aux entreprises pharmaceutiques pour obtenir l’approbation et le financement des gouvernements pour le d\u00e9veloppement des m\u00e9dicaments, et finalement l’approbation des nouvelles th\u00e9rapies.<\/p>\n

Nous vous encourageons donc \u00e0 manifester votre int\u00e9r\u00eat pour notre registre de patients, actuellement en cours d’\u00e9laboration, et \u00e0 choisir de recevoir des informations sur les futurs essais et recherches cliniques ici.<\/p>\n

 <\/p>\n

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Prenez contact avec nous. Participez.<\/h2>\n

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