{"id":13777,"date":"2021-04-29T23:09:50","date_gmt":"2021-04-30T03:09:50","guid":{"rendered":"https:\/\/clone.arsacs.com\/patients\/"},"modified":"2021-06-09T18:11:57","modified_gmt":"2021-06-09T22:11:57","slug":"patients","status":"publish","type":"page","link":"https:\/\/arsacs.com\/it\/patients\/","title":{"rendered":"Pazienti"},"content":{"rendered":"

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Pazienti<\/h1>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”3.25″ custom_padding=”|||” 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=”patient-registry” _builder_version=”4.8.2″ _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”][et_pb_row column_structure=”1_3,2_3″ _builder_version=”4.8.2″ _module_preset=”default” width=”100%” max_width=”1260px” module_alignment=”center” custom_margin=”||||false|false” custom_padding=”||||false|false”][et_pb_column type=”1_3″ _builder_version=”4.8.2″ _module_preset=”default”][\/et_pb_column][et_pb_column type=”2_3″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_cta title=”Registro internazionale dei pazienti” button_url=”\/it\/registro\/” button_text=”Clicca qui per registrarti” _builder_version=”4.9.4″ _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=”%%24%%” 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”]<\/p>\n

Invito a partecipare al Registro internazionale dei pazienti ARSACS se voi o un membro della vostra famiglia ha ricevuto una diagnosi di ARSACS. Questo invito \u00e8 valido anche se siete gi\u00e0 iscritti a un altro registro dei pazienti.<\/strong><\/p>\n

Il Registro internazionale dei pazienti ARSACS \u00e8 una raccolta di dati di base relativi a individui a cui \u00e8 stata diagnosticata l\u2019ARSACS, indipendentemente dal loro Paese di residenza. La vostra partecipazione al registro contribuir\u00e0 fortemente allo sviluppo di terapie per questa patologia.\u00a0 Il registro ha l\u2019obiettivo di facilitare l\u2019incontro fra i ricercatori e i pazienti che desiderano essere contattati per partecipare a trial clinici. Oltre a essere uno strumento fondamentale per i ricercatori, il registro dei pazienti dar\u00e0 un\u2019idea della dimensione del mercato e del potenziale di reclutamento per sperimentazioni cliniche, elementi cruciali quando si parla con aziende farmaceutiche della possibilit\u00e0 di sviluppare nuovi farmaci.<\/p>\n

La comunit\u00e0 scientifica ha bisogno del vostro contributo e voi potete contribuire cos\u00ec alla ricerca della terapia.<\/p>\n

[\/et_pb_cta][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_3,1_3,1_3″ _builder_version=”4.8.2″ _module_preset=”default” width=”100%” max_width=”1260px”][et_pb_column type=”1_3″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_cta title=”ARSACS International Patient Registry” button_url=”\/en\/register\/” button_text=”English” disabled_on=”off|off|off” _builder_version=”4.9.4″ _module_preset=”default” header_level=”h3″ header_font=”Montserrat|700|||||||” header_text_align=”center” header_font_size=”22px” 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=”%%24%%” button_on_hover=”off” button_alignment=”center” button_custom_padding=”10px|40px|10px|20px|true|false” width=”100%” max_width=”400px” module_alignment=”center” custom_padding=”15px|15px|15px|15px|true|true” border_radii=”on|6px|6px|6px|6px”][\/et_pb_cta][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_cta title=”Registre international des patients ARSACS” button_url=”\/fr\/inscription\/” button_text=”Francais” disabled_on=”off|off|off” _builder_version=”4.9.4″ _module_preset=”default” header_level=”h3″ header_font=”Montserrat|700|||||||” header_text_align=”center” header_font_size=”22px” 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=”%%24%%” button_on_hover=”off” button_alignment=”center” button_custom_padding=”10px|40px|10px|20px|true|false” width=”100%” max_width=”400px” module_alignment=”center” custom_padding=”15px|15px|15px|15px|true|true” hover_enabled=”0″ border_radii=”on|6px|6px|6px|6px” sticky_enabled=”0″][\/et_pb_cta][et_pb_cta title=”Registro internazionale dei pazienti ARSACS” button_url=”\/it\/registro-internazionale-dei-pazienti\/” button_text=”Italiano” disabled_on=”on|on|on” _builder_version=”4.9.4″ _module_preset=”default” header_level=”h3″ header_font=”Montserrat|700|||||||” header_text_align=”center” header_font_size=”22px” 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=”%%24%%” button_on_hover=”off” button_alignment=”center” button_custom_padding=”10px|40px|10px|20px|true|false” width=”100%” max_width=”400px” module_alignment=”center” custom_padding=”15px|15px|15px|15px|true|true” border_radii=”on|6px|6px|6px|6px” disabled=”on”][\/et_pb_cta][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_cta title=”Registro Internacional de Pacientes ARSACS” button_url=”\/es\/registro\/” button_text=”Espa\u00f1ol” _builder_version=”4.9.4″ _module_preset=”default” header_level=”h3″ header_font=”Montserrat|700|||||||” header_text_align=”center” header_font_size=”22px” 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=”%%24%%” button_on_hover=”off” button_alignment=”center” button_custom_padding=”10px|40px|10px|20px|true|false” width=”100%” max_width=”400px” module_alignment=”center” custom_padding=”15px|15px|15px|15px|true|true” hover_enabled=”0″ border_radii=”on|6px|6px|6px|6px” sticky_enabled=”0″][\/et_pb_cta][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.8.2″ _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”][et_pb_column type=”4_4″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_text _builder_version=”4.8.2″ _module_preset=”default”]<\/p>\n

You are not alone <\/strong><\/h3>\n

If you have been diagnosed with ARSACS, you are not alone. Persons affected with ARSACS are found all over the word. According to the Foundation\u2019s ARSACS International Patient Registry statistics, ARSACS is found in all 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=”4.8.2″ _module_preset=”default”][\/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=”4.8.2″ _module_preset=”default”][\/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=”4.8.2″ _module_preset=”default”][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Services” module_id=”connect-community” _builder_version=”4.8.2″ background_color=”#B48BDA” background_color_gradient_direction=”0deg” custom_padding=”|||”][et_pb_row _builder_version=”4.8.2″ _module_preset=”default”][et_pb_column type=”4_4″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_text _builder_version=”4.8.2″ _module_preset=”default” text_font_size=”16px” text_line_height=”1.8em” header_font=”Montserrat|700|||||||” header_line_height=”1.4em”]<\/p>\n

Your voice is very important. Make your voice heard by participating in ARSACS research. <\/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=”clinical-trials” _builder_version=”4.8.2″ background_color=”#FFB8FA” background_color_gradient_direction=”0deg” min_height=”488px” custom_padding=”|||”][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_column type=”1_2″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_text _builder_version=”4.8.2″ _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”]<\/p>\n

<\/h6>\n

PROSPAX <\/h2>\n

The Ataxia Charlevoix-Saguenay Foundation is one of the 3 patient advocacy organisations participating in the<\/span> <\/span>PRO<\/strong>gression chart of<\/span> <\/span>SPA<\/strong>stic ata<\/span>X<\/strong>ias (PROSPAX) research project. PROPSPAX, a 3 year project launched in September 2020, is a novel collaborative effort between several neurologists across Canada and Europe.<\/span> <\/span>
It is an unique opportunity for patients to have their voice heard by researchers, to make sure that the questions they are trying to answer are the ones that are important to a person living with the condition.<\/span> <\/span>The PROSPAX project will focus on two conditions \u2013 ARSACS and SPG7. There is a patient survey currently under development and your participation in the survey is crucial. Stay tuned. <\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_text _builder_version=”4.8.2″ _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”]<\/p>\n

<\/h6>\n

TREAT- ARCA<\/h2>\n

The Foundation is pleased to represent the ARSACS patients on the research project <\/span>\u201cDesigning a toolbox of paradigmatic treatments for a targeted molecular medicine approach to autosomal-recessive ataxias\u201d<\/em>. The project has received funding from the European Union\u2019s Horizon 2020 research and innovation programme under the European Joint Program Rare Disease. <\/span><\/p>\n

The specific objective is the pre-clinical-research to develop effective therapies for rare diseases. It aims at designing and testing new complementary treatment strategies, including both repurposed and newly identified molecules, as well as gene therapies in two exemplary multisystemic flagship ARCAS: Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS) and COQ8A-ataxia (ARCA2). It is a 3 year project.<\/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=”research-study” _builder_version=”4.8.2″ 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”][et_pb_row _builder_version=”3.25″][et_pb_column type=”4_4″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.9.4″ 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”]<\/p>\n

Preclinical and clinical trials<\/span><\/h2>\n

The Foundation is ready to conduct preclinical and clinical trials. It has the expertise and the tools available and is always looking at opportunities to do clinical trials. However, the participation of ARSACS patients is crucial to conduct such trials. <\/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=”4.8.2″ use_background_color_gradient=”on” background_color_gradient_start=”rgba(237,239,250,0)” background_color_gradient_end=”#edeffa” background_color_gradient_type=”radial” background_color_gradient_direction_radial=”top left” background_color_gradient_start_position=”20%” background_color_gradient_end_position=”80%” background_color_gradient_overlays_image=”on” 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”][et_pb_row column_structure=”1_2,1_2″ make_equal=”on” custom_padding_last_edited=”on|desktop” _builder_version=”4.8.2″ 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%”][et_pb_column type=”1_2″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_divider show_divider=”off” _builder_version=”4.8.2″ height=”300px”][\/et_pb_divider][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”3.25″ custom_padding=”100px||20%|” custom_padding_tablet=”|10%||10%” custom_padding_phone=”” custom_padding_last_edited=”on|desktop” padding_tablet=”|10%||10%” padding_last_edited=”on|desktop” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.8.2″ 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”]<\/p>\n

<\/h6>\n

Research that heals so there is hope<\/h2>\n

The Foundation’s mission is to discover and develop a treatment for the Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).<\/strong><\/p>\n

Progress has been made over the years in identifying the source of the disorder. Your support is crucial to continue funding high potential projects as well as a clinical trial.<\/strong><\/p>\n

[\/et_pb_text][et_pb_button button_url=”https:\/\/arsacs.com\/donate” button_text=”Fai una donazione” _builder_version=”4.8.2″ _dynamic_attributes=”button_url” button_text_color=”#ffffff” button_bg_color=”#52A2EC” box_shadow_style=”preset3″ button_text_color_hover=”#ffffff” button_border_radius_hover=”100px” button_bg_color_hover=”rgba(1,77,183,0.8)” locked=”off” button_text_size__hover_enabled=”off” button_one_text_size__hover_enabled=”off” button_two_text_size__hover_enabled=”off” button_text_color__hover_enabled=”on” button_text_color__hover=”#ffffff” button_one_text_color__hover_enabled=”off” button_two_text_color__hover_enabled=”off” button_border_width__hover_enabled=”off” button_one_border_width__hover_enabled=”off” button_two_border_width__hover_enabled=”off” button_border_color__hover_enabled=”off” button_one_border_color__hover_enabled=”off” button_two_border_color__hover_enabled=”off” button_border_radius__hover_enabled=”on” button_border_radius__hover=”100px” button_one_border_radius__hover_enabled=”off” button_two_border_radius__hover_enabled=”off” button_letter_spacing__hover_enabled=”off” button_one_letter_spacing__hover_enabled=”off” button_two_letter_spacing__hover_enabled=”off” button_bg_color__hover_enabled=”on” button_bg_color__hover=”rgba(1,77,183,0.8)” button_one_bg_color__hover_enabled=”off” button_two_bg_color__hover_enabled=”off”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Services” module_id=”connect-community” _builder_version=”4.8.2″ background_color=”#ffffff” background_color_gradient_direction=”0deg” custom_padding=”|||”][et_pb_row _builder_version=”4.8.2″ _module_preset=”default”][et_pb_column type=”4_4″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_text _builder_version=”4.9.4″ _module_preset=”default” text_font_size=”18px” text_line_height=”1.8em” header_font=”Montserrat|700|||||||” header_line_height=”1.4em” hover_enabled=”0″ header_font_size=”40px” text_font=”|600|||||||” sticky_enabled=”0″]<\/p>\n

Connect with the ARSACS community online<\/h1>\n

Stay tuned on the latest news and development. Join the ARSACS community via the different social media Facebook, Twitter, Linked In.<\/p>\n

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

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Coming Soon<\/p>\n

[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”off|desktop” prev_background_color=”#ffffff” admin_label=”Footer” module_id=”contact-footer” _builder_version=”4.8.2″ use_background_color_gradient=”on” background_color_gradient_start=”rgba(40,167,227,0.5)” background_color_gradient_end=”rgba(255,255,255,0)” background_color_gradient_type=”radial” background_color_gradient_direction_radial=”top right” background_color_gradient_overlays_image=”on” background_image=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/02\/subscribe.png” custom_padding=”100px||100px||true” top_divider_style=”asymmetric” top_divider_height=”50px” top_divider_flip=”vertical|horizontal” saved_tabs=”all”][et_pb_row column_structure=”1_4,1_4,1_2″ use_custom_gutter=”on” gutter_width=”1″ make_equal=”on” module_id=”contact-arsacs” _builder_version=”4.9.4″][et_pb_column type=”1_4″ _builder_version=”4.8.2″ custom_padding=”2vw||||false|false” custom_padding__hover=”|||”][et_pb_blurb use_icon=”on” font_icon=”%%249%%” icon_color=”#52a2ec” use_circle=”on” circle_color=”#FFFFFF” content_max_width=”570px” use_icon_font_size=”on” icon_font_size=”20px” _builder_version=”4.8.2″ header_font=”Montserrat||||||||” header_font_size=”16px” header_line_height=”1.5em” body_font=”Montserrat||||||||” body_text_color=”rgba(206,206,206,0.9)” body_font_size=”16px” body_line_height=”1.5em” text_orientation=”center” background_layout=”dark” custom_margin=”|||” custom_padding=”|||” border_radii=”on|10px|10px|10px|10px” locked=”off”]<\/p>\n

1000 Sherbrooke W, suite 2100, Montreal, QC H3A&nbsp;3G4<\/p>\n

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

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