{"id":30277,"date":"2019-08-25T23:00:46","date_gmt":"2019-08-25T21:00:46","guid":{"rendered":"https:\/\/progena.ch\/ueber-uns\/"},"modified":"2024-07-11T16:01:52","modified_gmt":"2024-07-11T14:01:52","slug":"ueber-uns","status":"publish","type":"page","link":"https:\/\/progena.ch\/fr\/ueber-uns\/","title":{"rendered":"A propos"},"content":{"rendered":"

[et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb3.27.4″ custom_padding=\u00a0\u00bb20px||||false|false\u00a0\u00bb fb_built=\u00a0\u00bb1″ _i=\u00a0\u00bb0″ _address=\u00a0\u00bb0″][et_pb_row column_structure=\u00a0\u00bb2_3,1_3″ admin_label=\u00a0\u00bbLigne\u00a0\u00bb _builder_version=\u00a0\u00bb3.27.4″ custom_padding=\u00a0\u00bb20px||||false|false\u00a0\u00bb make_fullwidth=\u00a0\u00bboff\u00a0\u00bb use_custom_width=\u00a0\u00bboff\u00a0\u00bb width_unit=\u00a0\u00bboff\u00a0\u00bb custom_width_px=\u00a0\u00bb1080px\u00a0\u00bb custom_width_percent=\u00a0\u00bb80%\u00a0\u00bb _i=\u00a0\u00bb0″ _address=\u00a0\u00bb0.0″][et_pb_column type=\u00a0\u00bb2_3″ _builder_version=\u00a0\u00bb3.25″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb _i=\u00a0\u00bb0″ _address=\u00a0\u00bb0.0.0″ custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb3.27.4″ text_text_align=\u00a0\u00bbcenter\u00a0\u00bb _i=\u00a0\u00bb0″ _address=\u00a0\u00bb0.0.0.0″]<\/p>\n

A propos<\/h1>\n

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La Fondation Progena a \u00e9t\u00e9 fond\u00e9e en 2006 par Huguette et Robert Palm lorsque leur fils fut diagnostiqu\u00e9 de la dystrophie musculaire de Duchenne.
Progena est une fondation suisse \u00e0 but non lucratif reconnue, dont le but est de fournir aux familles et aux personnes atteintes de dystrophie musculaire de Duchenne des informations sur la maladie, son \u00e9volution et la recherche.<\/p>\n

Progena repr\u00e9sente la Suisse \u00e0 l’\u00e9tranger en tant qu’organisation de patients et elle est membre de l’Organisation Duchenne mondiale (WDO) et de l’organisation internationale pour les maladies neuromusculaires, TREAT-NMD.<\/p>\n

Elle est \u00e9galement membre de ProRaris, l’organisation fa\u00eeti\u00e8re des associations de patients pour les personnes atteintes de maladies rares en Suisse.<\/p>\n

Progena initia le Registre suisse des patients, dont elle soutena financi\u00e8rement la cr\u00e9ation. Les patients suisses ont ainsi eu la possibilit\u00e9 de participer plus facilement aux essais cliniques les plus importants d’Europe.<\/p>\n

En 2011, Progena fut co-organisatrice du congr\u00e8s TREAT-NMD \u00e0 Gen\u00e8ve.<\/p>\n

En 2016, Progena organisa la premi\u00e8re conf\u00e9rence Duchenne germanophone en Suisse. Puis \u00e9galement en 2018 et 2022.<\/p>\n

En 2019, le nom de la \u00abFondation Progena – Action pour les enfants atteints de maladies musculaires rares\u00bb a chang\u00e9 pour: Progena \u2013 Swiss Duchenne Foundation.<\/p>\n

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