{"id":13768,"date":"2021-04-29T23:09:50","date_gmt":"2021-04-30T03:09:50","guid":{"rendered":"https:\/\/clone.arsacs.com\/les-patients\/"},"modified":"2025-01-16T09:31:04","modified_gmt":"2025-01-16T14:31:04","slug":"les-patients","status":"publish","type":"page","link":"https:\/\/arsacs.com\/fr\/les-patients\/","title":{"rendered":"Personnes atteintes de l\u2019ARSACS"},"content":{"rendered":"

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Personnes atteintes de l\u2019ARSACS<\/h1>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ next_background_color=”#B48BDA” admin_label=”globe section” module_id=”registre-des-patients” _builder_version=”4.16″ _module_preset=”default” background_image=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/05\/registry-globe-isolated-topleftt.jpg” background_size=”initial” background_position=”top_left” custom_margin=”||||false|false” custom_padding=”||120px||false|false” bottom_divider_style=”asymmetric” bottom_divider_height=”50px” bottom_divider_flip=”horizontal” global_colors_info=”{}”][et_pb_row column_structure=”1_3,2_3″ _builder_version=”4.16″ _module_preset=”default” width=”100%” max_width=”1260px” module_alignment=”center” custom_margin=”||||false|false” custom_padding=”||||false|false” global_colors_info=”{}”][et_pb_column type=”1_3″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_column][et_pb_column type=”2_3″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_cta title=”Registre international des patients ARSACS” button_url=”https:\/\/arsacs.com\/fr\/inscription\/” button_text=”S’inscrire ici” _builder_version=”4.16″ _module_preset=”default” header_font=”Montserrat|700|||||||” header_text_align=”left” header_font_size=”30px” header_line_height=”1.5em” body_text_align=”left” body_font_size=”16px” background_color=”rgba(0,173,232,0.9)” custom_button=”on” button_bg_color=”#F7931E” button_border_color=”RGBA(0,0,0,0)” button_border_radius=”30px” button_font=”|700|||||||” button_icon=”9||divi||400″ button_on_hover=”off” button_alignment=”left” button_custom_padding=”10px|40px|10px|20px|true|false” width=”100%” module_alignment=”left” border_radii=”on|6px|6px|6px|6px” global_colors_info=”{}”]<\/p>\n

Vous \u00eates invit\u00e9s \u00e0 vous inscrire au registre international des patients ARSACS si vous ou un membre de votre famille avez re\u00e7u un diagnostic confirmant que la personne est atteinte de l\u2019ARSACS. Nous vous encourageons \u00e0 vous inscrire m\u00eame si vous \u00eates d\u00e9j\u00e0 inscrit \u00e0 un autre registre.<\/strong><\/p>\n

Le registre international des patients ARSACS consiste en une base de donn\u00e9es sur les personnes diagnostiqu\u00e9es avec l\u2019ARSACS ind\u00e9pendamment de leur pays de r\u00e9sidence. Votre participation \u00e0 ce registre contribuera grandement au d\u00e9veloppement de traitements de la maladie. En ce sens, le registre facilite la communication entre les chercheurs et les patients qui souhaitent \u00eatre contact\u00e9s pour participer \u00e0 des essais cliniques. En plus d\u2019\u00eatre un outil essentiel pour les chercheurs, un registre des patients donnera une id\u00e9e de la taille du march\u00e9 et du potentiel de recrutement pour des essais, \u00e9l\u00e9ments cruciaux lors de discussions avec les compagnies pharmaceutiques quant aux possibilit\u00e9s de d\u00e9veloppement de m\u00e9dicaments.<\/p>\n

Le monde de la recherche a besoin de vous et ceci est une fa\u00e7on pour vous d\u2019aider au d\u00e9veloppement d\u2019un traitement.<\/p>\n

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Vous n’\u00eates pas seul <\/strong><\/h3>\n

Si vous avez re\u00e7u un diagnostic d\u2019ARSACS, vous n\u2019\u00eates pas seul. Des personnes atteintes de l’ARSACS se retrouvent partout dans le monde. Selon les donn\u00e9es du registre ineternational des patients ARSACS de la Fondation, des patients atteints de l’ARSACS se retrouvent sur tous les continents.<\/a><\/p>\n

<\/h5>\n

[\/et_pb_text][et_pb_text _builder_version=”4.17.4″ _module_preset=”default” global_colors_info=”{}”]2022_06_20_mappa10<\/a><\/p>\n

 [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row disabled_on=”on|on|on” _builder_version=”4.17.4″ _module_preset=”default” background_color=”#dbdee3″ width=”100%” max_width=”1260px” module_alignment=”center” custom_padding=”30px|50px|30px|50px|true|true” border_radii=”on|10px|10px|10px|10px” disabled=”on” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

Vous n’\u00eates pas seul <\/strong><\/h3>\n

Si vous avez re\u00e7u un diagnostic d\u2019ARSACS, vous n\u2019\u00eates pas seul. Des personnes atteintes de l’ARSACS se retrouvent partout dans le monde. Selon les donn\u00e9es du registre ineternational des patients ARSACS de la Fondation, des patients atteints de l’ARSACS se retrouvent sur tous les continents.<\/a><\/p>\n

<\/h5>\n

[\/et_pb_text][et_pb_image src=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/05\/ARSACS-aroundtheworld-registrymap.jpg” title_text=”ARSACS-aroundtheworld-registrymap” url=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/04\/Paolo_mappa9.pdf” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][et_pb_image src=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/05\/ARSACS-aroundtheworld-stats1b.jpg” title_text=”ARSACS-aroundtheworld-stats1b” url=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/04\/Paolo_mappa9.pdf” url_new_window=”on” align=”center” _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][et_pb_image src=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/05\/ARSACS-aroundtheworld-stats2.jpg” title_text=”ARSACS-aroundtheworld-stats2″ url=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/04\/Paolo_mappa9.pdf” url_new_window=”on” _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Services” module_id=”participation-des-patients” _builder_version=”4.16″ background_color=”#B48BDA” background_color_gradient_direction=”0deg” custom_padding=”|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.16″ _module_preset=”default” text_font_size=”16px” text_line_height=”1.8em” header_font=”Montserrat|700|||||||” header_line_height=”1.4em” global_colors_info=”{}”]<\/p>\n

Votre opinion est tr\u00e8s importante. Assurez-vous de vous faire entendre en participant \u00e0 la recherche sur l’ARSACS. <\/strong><\/h1>\n

 <\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Contact Info” module_id=”etude-de-recherche” _builder_version=”4.16″ background_color=”#FFB8FA” background_color_gradient_direction=”0deg” min_height=”488px” custom_padding=”|||” global_colors_info=”{}”][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.16″ _module_preset=”default” text_font=”Montserrat||||||||” text_font_size=”16px” text_line_height=”1.8em” header_2_font=”Montserrat|700|||||||” header_2_font_size=”40px” header_2_line_height=”1.4em” header_6_font=”Montserrat|600||on|||||” header_6_text_color=”#F7931E” header_6_font_size=”16px” header_6_letter_spacing=”2px” header_6_line_height=”1.5em” global_colors_info=”{}”]<\/p>\n

<\/h6>\n

PROSPAX <\/h2>\n

La Fondation de l\u2019Ataxie Charlevoix-Saguenay, un des 3 organismes repr\u00e9sentant les patients, participe au projet de recherche<\/span> <\/span>PRO<\/strong>gression chart of<\/span> <\/span>SPA<\/strong>stic ata<\/span>X<\/strong>ias (PROSPAX). PROSPAX, un projet de 3 ans lanc\u00e9 en septembre 2020, adopte une nouvelle approche de collaboration entre des neurologues du Canada et l\u2019Europe.<\/span> <\/span>
Le projet offre une opportunit\u00e9 unique aux patients de se faire entendre par les chercheurs et ainsi de s’assurer que les questions auxquelles ils essaient de r\u00e9pondre sont bien celles qui sont importantes aux personnes vivant avec la maladie.<\/span> <\/span>Le projet PROSPAX se concentre sur 2 conditions \u2013 ARSACS et SPG7. Un sondage aupr\u00e8s des patients est en d\u00e9veloppement et votre participation au sondage sera tr\u00e8s importante. A suivre <\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.16″ _module_preset=”default” text_font=”Montserrat||||||||” text_font_size=”16px” text_line_height=”1.8em” header_2_font=”Montserrat|700|||||||” header_2_font_size=”40px” header_2_line_height=”1.4em” header_6_font=”Montserrat|600||on|||||” header_6_text_color=”#F7931E” header_6_font_size=”16px” header_6_letter_spacing=”2px” header_6_line_height=”1.5em” global_colors_info=”{}”]<\/p>\n

<\/h6>\n

TREAT- ARCA<\/h2>\n

La Fondation est heureuse de repr\u00e9senter les patients de l\u2019ARSACS dans le cadre du projet de recherche<\/span>\u201cDesigning a toolbox of paradigmatic treatments for a targeted molecular medicine approach to autosomal-recessive ataxias\u201d<\/em>. Le projet a re\u00e7u des fonds du programme de recherche et d\u2019innovation Horizon 2020 de l\u2019Union europ\u00e9enne sous EJPR (European Joint Programme Rare Diseases). <\/span><\/p>\n

L\u2019objectif sp\u00e9cifique est la recherche pr\u00e9clinique pour d\u00e9velopper des th\u00e9rapies efficaces pour les maladies rares. On vise \u00e0 concevoir et \u00e0 tester de nouvelles strat\u00e9gies de traitement compl\u00e9mentaires, y compris des mol\u00e9cules r\u00e9utilis\u00e9es et nouvellement identifi\u00e9es, ainsi que des th\u00e9rapies g\u00e9niques dans deux multisyst\u00e8mes ARCAS exemplaires: l\u2019ataxie spastique r\u00e9cessive autosomique de Charlevoix-Saguenay (ARSACS) et COQ8A-ataxie (ARCA2). Le projet est d’une dur\u00e9e de 3 ans.<\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ prev_background_color=”#FFB8FA” admin_label=”FAQ” module_id=”essais-cliniques” _builder_version=”4.16″ background_color=”#8CA1ED” module_alignment=”right” custom_padding=”100px|0px|100px|0px|true|false” top_divider_style=”asymmetric” top_divider_height=”50px” top_divider_flip=”horizontal” bottom_divider_style=”asymmetric” bottom_divider_color=”#edeffa” bottom_divider_height=”50px” bottom_divider_flip=”horizontal” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.16″ text_font=”Montserrat||||||||” text_font_size=”16px” text_line_height=”1.8em” link_font=”Montserrat|700|||||||” link_text_color=”#fa546d” link_font_size=”22px” link_line_height=”1.5em” header_font=”||||||||” header_2_font=”Montserrat|700|||||||” header_2_font_size=”40px” header_2_line_height=”1.4em” header_6_font=”Montserrat|600||on|||||” header_6_text_color=”#fa546d” header_6_font_size=”16px” header_6_letter_spacing=”2px” header_6_line_height=”1.5em” background_layout=”dark” max_width_last_edited=”off|desktop” module_alignment=”left” custom_margin=”|||” custom_padding=”|||” header_2_font_size_tablet=”” header_2_font_size_phone=”24px” header_2_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n

Essais pr\u00e9-cliniques et cliniques<\/span><\/h2>\n

La Fondation est pr\u00eate pour des essais pr\u00e9-cliniques et cliniques. Elle poss\u00e8de l’expertise et les outils et est toujours \u00e0 la recherche d’opportunit\u00e9 pour des essais cliniques. Par contre, la participation des patients ARSACS est cruciale pour effectuer de tels essais. <\/strong><\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”on|tablet” admin_label=”Live Chat” _builder_version=”4.16″ use_background_color_gradient=”on” background_color_gradient_type=”circular” background_color_gradient_direction_radial=”top left” background_color_gradient_stops=”rgba(237,239,250,0) 20%|#edeffa 80%” background_color_gradient_overlays_image=”on” background_color_gradient_start=”rgba(237,239,250,0)” background_color_gradient_start_position=”20%” background_color_gradient_end=”#edeffa” background_color_gradient_end_position=”80%” background_image=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/03\/donate1.12.png” background_position=”top_left” module_alignment=”right” custom_margin=”|||” custom_margin_tablet=”|0%||0%” custom_margin_last_edited=”off|desktop” custom_padding=”0px|0px|0|0px|false|false” custom_padding_tablet=”|||” custom_padding_phone=”” top_divider_arrangement=”above_content” top_divider_height_tablet=”90px” top_divider_height_phone=”90px” bottom_divider_style=”asymmetric3″ bottom_divider_color=”#ffffff” bottom_divider_height=”100%” bottom_divider_repeat=”0.6x” bottom_divider_flip=”horizontal” bottom_divider_arrangement=”above_content” bottom_divider_height_tablet=”90px” bottom_divider_height_phone=”90px” bottom_divider_height_last_edited=”on|phone” animation_style=”slide” animation_direction=”left” animation_intensity_slide=”4%” module_alignment_tablet=”” module_alignment_phone=”” module_alignment_last_edited=”on|desktop” locked=”off” global_colors_info=”{}”][et_pb_row column_structure=”1_2,1_2″ make_equal=”on” custom_padding_last_edited=”on|desktop” _builder_version=”4.16″ width=”89.7%” max_width=”100%” custom_margin=”|||0%” custom_margin_tablet=”|||” custom_margin_last_edited=”off|desktop” custom_padding=”0|6.1%|5px|0px|false|false” custom_padding_tablet=”|0%||” custom_padding_phone=”” use_custom_width=”on” width_unit=”off” custom_width_percent=”100%” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_divider show_divider=”off” _builder_version=”4.16″ height=”300px” global_colors_info=”{}”][\/et_pb_divider][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ custom_padding=”100px||20%|” custom_padding_tablet=”|10%||10%” custom_padding_phone=”” custom_padding_last_edited=”on|desktop” global_colors_info=”{}” padding_tablet=”|10%||10%” padding_last_edited=”on|desktop” custom_padding__hover=”|||” padding_phone=”|10%||10%”][et_pb_text _builder_version=”4.16″ text_font=”Montserrat||||||||” text_font_size=”16px” text_line_height=”1.8em” link_font=”Montserrat|700|||||||” link_text_color=”#fa546d” link_font_size=”22px” link_line_height=”1.5em” header_font=”||||||||” header_2_font=”Montserrat|700|||||||” header_2_font_size=”40px” header_2_line_height=”1.4em” header_6_font=”Montserrat|600||on|||||” header_6_text_color=”#fa546d” header_6_font_size=”16px” header_6_letter_spacing=”2px” header_6_line_height=”1.5em” width=”89.2%” max_width_last_edited=”off|desktop” module_alignment=”left” custom_margin=”|32px|||false|false” custom_padding=”|||” header_2_font_size_tablet=”” header_2_font_size_phone=”24px” header_2_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n

<\/h6>\n

Il y a de l’espoir parce que la recherche gu\u00e9rit<\/h2>\n

La mission de la Fondation est de d\u00e9couvrir et de d\u00e9velopper un traitement pour l\u2019ataxie spastique r\u00e9cessive autosomique de Charlevoix-Saguenay (ARSACS).<\/strong><\/p>\n

Des progr\u00e8s ont \u00e9t\u00e9 r\u00e9alis\u00e9s au fil des ans dans l\u2019identification de la source de la maladie. La Fondation a besoin de votre soutien pour continuer \u00e0 financer des projets de recherche de haut calibre ainsi que des essais cliniques.<\/strong><\/p>\n

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Soyez en contact avec la communaut\u00e9 ARSACS en ligne<\/h1>\n

Restez \u00e0 l\u2019\u00e9coute des nouvelles et des derniers d\u00e9veloppements. Joignez-vous \u00e0 la communaut\u00e9 ARSACS via les diff\u00e9rents m\u00e9dia sociaux Facebook, Twitter, RareConnect.<\/p>\n

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

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1000 Sherbrooke O, bur. 2100, Montr\u00e9al, QC H3A 3G4<\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.16″ custom_padding=”2vw||||false|false” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_blurb use_icon=”on” font_icon=”||divi||400″ icon_color=”#52a2ec” image_icon_background_color=”#FFFFFF” image_icon_width=”20px” content_max_width=”570px” _builder_version=”4.16″ header_font=”Montserrat||||||||” header_font_size=”16px” header_line_height=”1.5em” body_font=”Montserrat||||||||” body_font_size=”16px” body_line_height=”1.5em” body_link_text_color=”rgba(206,206,206,0.9)” image_icon_custom_padding=”25px|25px|25px|25px|false|false” text_orientation=”center” background_layout=”dark” custom_margin=”|||” custom_padding=”|||” border_radii=”on|10px|10px|10px|10px” border_radii_image=”on|100%|100%|100%|100%” icon_font_size=”20px” use_circle=”on” circle_color=”#FFFFFF” locked=”off” global_colors_info=”{}” background_layout__hover_enabled=”on|desktop” image_icon_background_color__sticky_enabled=”#00ade8″ image_icon_background_color__sticky=”#00ade8″ background_layout__hover=”dark”]<\/p>\n

1 (514) 370-3625<\/span><\/a>
ataxie@arsacs.com<\/a><\/p>\n

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