{"id":2111,"date":"2018-07-26T10:25:01","date_gmt":"2018-07-26T15:25:01","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2111"},"modified":"2018-07-26T10:25:01","modified_gmt":"2018-07-26T15:25:01","slug":"organization-jain-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/lgmd2b\/2018\/07\/26\/organization-jain-foundation\/","title":{"rendered":"ORGANISATION : Fondation Jain\u00a0"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOM DE L'ORGANISATION<\/strong>: Fondation Jain\u00a0\u00a0\u00a0<\/p>\n

SITE WEB :<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.jain-foundation.org<\/a><\/p>\n

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

TWITTER :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> https:\/\/twitter.com\/JainFoundation<\/a><\/p>\n

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

La dysferlinopathie (LGMD2B\/Miyoshi Myopathy Type 1), qui est caus\u00e9e par des mutations du g\u00e8ne de la dysferline.<\/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

Oui, nous disposons d'un registre pour les patients atteints de dysferlinopathie. Nous encourageons les patients \u00e0 nous contacter \u00e0 l'adresse patients@jain-foundation.org ; de plus amples informations sur le registre sont disponibles \u00e0 l'adresse suivante https:\/\/www.jain-foundation.org\/patient-physician-resources\/patient-registration<\/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

Nous sommes constitu\u00e9s en fondation priv\u00e9e \u00e0 but non lucratif aux \u00c9tats-Unis. \u00c0 ce titre, nous ne sollicitons pas de dons du public.<\/p>\n

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

La Fondation Jain a \u00e9t\u00e9 cr\u00e9\u00e9e apr\u00e8s que le fils de notre fondateur a \u00e9t\u00e9 diagnostiqu\u00e9 comme \u00e9tant atteint de dysferlinopathie. Suite aux contacts de la famille avec d'autres patients et chercheurs, la Fondation Jain a \u00e9t\u00e9 cr\u00e9\u00e9e en 2005.<\/p>\n

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

D\u00e9velopper des traitements et des rem\u00e8des pour la dysferlinopathie.<\/p>\n

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

Nous nous concentrons principalement sur la recherche et le d\u00e9veloppement de traitements, plut\u00f4t que sur les services aux patients. Cependant, il n'est pas possible de tester des traitements ou de d\u00e9terminer des mesures de r\u00e9sultats pour des essais cliniques sans patients, et le diagnostic reste un grand d\u00e9fi pour toutes les formes de LGMD. C'est pourquoi nous tenons un registre des patients et fournissons des services de diagnostic aux patients susceptibles d'\u00eatre atteints de dysferlinopathie, afin de les aider \u00e0 clarifier leur diagnostic et de leur permettre d'acc\u00e9der aux essais cliniques et, \u00e0 terme, aux traitements.<\/p>\n

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

Nous venons d'achever une \u00e9tude clinique pluriannuelle, The Clinical Outcome Study of Dysferlinopathy, \u00e0 laquelle ont particip\u00e9 quelque 200 patients dans 15 centres cliniques de huit pays. Cette \u00e9tude a permis d'\u00e9tablir l'histoire naturelle d\u00e9finitive de la dysferlinopathie et d'identifier les meilleures mesures de r\u00e9sultats (ce qui sera mesur\u00e9, chez combien de personnes, pendant combien de temps) \u00e0 utiliser dans les essais cliniques pour la dysferlinopathie afin de d\u00e9terminer si un traitement est efficace. Cette \u00e9tude est sur le point de passer \u00e0 l'\u00e9tape suivante, au cours de laquelle nos r\u00e9sultats seront confirm\u00e9s, 100 autres patients pourront y participer et quatre nouveaux centres m\u00e9dicaux seront impliqu\u00e9s.<\/p>\n

Que voulez-vous que le monde sache \u00e0 propos de VOTRE ORGANISATION ?<\/strong>:<\/p>\n

Nous poursuivons plusieurs approches pour traiter la dysferlinopathie, notamment la th\u00e9rapie g\u00e9nique, la r\u00e9orientation de m\u00e9dicaments d\u00e9j\u00e0 sur le march\u00e9 pour d'autres maladies et le d\u00e9veloppement de nouveaux m\u00e9dicaments. En ce qui concerne la th\u00e9rapie g\u00e9nique, nous travaillons actuellement en \u00e9troite collaboration avec Myonexus, qui d\u00e9veloppe une th\u00e9rapie g\u00e9nique AAV \u00e0 \"double vecteur\" pour la dysferlinopathie. En outre, nous avons jusqu'\u00e0 pr\u00e9sent test\u00e9 plus de 15 traitements m\u00e9dicamenteux candidats dans des \u00e9tudes pr\u00e9cliniques sur des souris atteintes de dysferlinopathie et nous sommes toujours en train d'explorer et de tester de nouvelles options th\u00e9rapeutiques. Nous esp\u00e9rons qu'un ou plusieurs de ces traitements auront un effet b\u00e9n\u00e9fique sur la dysferlinopathie.<\/p>\n

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

Comme nous ne collectons pas d'argent aupr\u00e8s du public, le soutien que nous recherchons aupr\u00e8s des patients et d'autres personnes est de rejoindre le registre de la dysferline, d'envisager de participer \u00e0 des \u00e9tudes cliniques, de sensibiliser \u00e0 cette maladie et de s'engager au sein de la communaut\u00e9. Il devient \u00e9vident que dans le cas des maladies rares, l'existence d'une organisation de d\u00e9fense solide et d'une communaut\u00e9 de patients et de familles est essentielle au d\u00e9veloppement de traitements. La Jain Foundation peut fournir l'organisation, mais nous avons besoin de votre soutien pour construire une communaut\u00e9 forte !<\/p>\n

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

Les patients diagnostiqu\u00e9s ou suspect\u00e9s d'\u00eatre atteints de dysferlinopathie peuvent nous contacter \u00e0 l'adresse patients@jain-foundation.org. En outre, nous encourageons les gens \u00e0 visiter notre site web, qui contient de nombreuses informations sur la dysferlinopathie et nos programmes de recherche.<\/p>\n

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

Nous nous effor\u00e7ons d'\u00e9liminer les obstacles qui nous emp\u00eachent d'atteindre notre objectif, \u00e0 savoir la mise au point de traitements et de rem\u00e8des. Il s'agit notamment de combler les lacunes dans les connaissances scientifiques qui peuvent nous aider \u00e0 identifier des traitements possibles, d'acqu\u00e9rir une meilleure compr\u00e9hension clinique de la maladie pour permettre la r\u00e9alisation d'essais cliniques fructueux, de maintenir une communaut\u00e9 de patients engag\u00e9s en utilisant le registre de la dysferline afin que les essais puissent \u00eatre aliment\u00e9s de mani\u00e8re efficace et de r\u00e9aliser des essais pr\u00e9cliniques et cliniques sur les th\u00e9rapies potentielles.<\/p>\n

\u00a0<\/p>","protected":false},"excerpt":{"rendered":"

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