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L’informazione istituzionale al servizio della comunità dei rari

[fusion_builder_container type=”flex” hundred_percent=”no” hundred_percent_height=”no” hundred_percent_height_scroll=”no” align_content=”stretch” flex_align_items=”flex-start” flex_justify_content=”flex-start” hundred_percent_height_center_content=”yes” equal_height_columns=”no” container_tag=”div” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” status=”published” spacing_medium=”” spacing_small=”” padding_dimensions_medium=”” padding_dimensions_small=”” border_sizes=”” border_style=”solid” box_shadow=”no” box_shadow_blur=”0″ box_shadow_spread=”0″ gradient_start_color=”” gradient_end_color=”” gradient_start_position=”0″ gradient_end_position=”100″ gradient_type=”linear” radial_direction=”center center” linear_angle=”180″ background_position=”center center” background_repeat=”no-repeat” fade=”no” background_parallax=”none” enable_mobile=”no” parallax_speed=”0.3″ background_blend_mode=”none” video_aspect_ratio=”16:9″ video_loop=”yes” video_mute=”yes” render_logics=”” absolute=”off” absolute_devices=”small,medium,large” sticky=”off” sticky_devices=”small-visibility,medium-visibility,large-visibility” sticky_transition_offset=”0″ scroll_offset=”0″ animation_direction=”left” animation_speed=”0.3″ filter_hue=”0″ filter_saturation=”100″ filter_brightness=”100″ filter_contrast=”100″ filter_invert=”0″ filter_sepia=”0″ filter_opacity=”100″ filter_blur=”0″ filter_hue_hover=”0″ filter_saturation_hover=”100″ filter_brightness_hover=”100″ filter_contrast_hover=”100″ filter_invert_hover=”0″ filter_sepia_hover=”0″ filter_opacity_hover=”100″ filter_blur_hover=”0″][fusion_builder_row][fusion_builder_column type=”1_1″ layout=”1_1″ align_self=”auto” content_layout=”column” align_content=”flex-start” valign_content=”flex-start” content_wrap=”wrap” spacing=”” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=”” type_medium=”” type_small=”” order_medium=”0″ order_small=”0″ dimension_spacing_medium=”” dimension_spacing_small=”” dimension_spacing=”” dimension_margin_medium=”” dimension_margin_small=”” margin_top=”” margin_bottom=”” padding_medium=”” padding_small=”” padding_top=”” padding_right=”” padding_bottom=”” padding_left=”” hover_type=”none” border_sizes=”” border_color=”” border_style=”solid” border_radius=”” box_shadow=”no” dimension_box_shadow=”” box_shadow_blur=”0″ box_shadow_spread=”0″ box_shadow_color=”” box_shadow_style=”” background_type=”single” gradient_start_color=”” gradient_end_color=”” gradient_start_position=”0″ gradient_end_position=”100″ gradient_type=”linear” radial_direction=”center center” linear_angle=”180″ background_color=”” background_image=”” background_image_id=”” background_position=”left top” background_repeat=”no-repeat” background_blend_mode=”none” render_logics=”” filter_type=”regular” filter_hue=”0″ filter_saturation=”100″ filter_brightness=”100″ filter_contrast=”100″ filter_invert=”0″ filter_sepia=”0″ filter_opacity=”100″ filter_blur=”0″ filter_hue_hover=”0″ filter_saturation_hover=”100″ filter_brightness_hover=”100″ filter_contrast_hover=”100″ filter_invert_hover=”0″ filter_sepia_hover=”0″ filter_opacity_hover=”100″ filter_blur_hover=”0″ animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”true” border_position=”all” first=”true”][fusion_text columns=”” column_min_width=”” column_spacing=”” rule_style=”default” rule_size=”” rule_color=”” font_size=”” line_height=”” letter_spacing=”” text_color=”” content_alignment_medium=”” content_alignment_small=”” content_alignment=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=””]Si terrà il prossimo 11 novembre alle ore 15.00 il nuovo appuntamento con il meeting scientifico promosso dall’Istituto Superiore di Sanità e da Uniamo. Fra gli altri relatori e relatrici, interverranno: il Dr. Sergio Iavicoli, Direttore generale della Comunicazione e dei Rapporti europei e internazionali, Ministero della Salute e il Dr. Luca Fornara, Responsabile Filiera Giuridico-Amministrativa e Prodotti WEB-Based – Istituto Poligrafico e Zecca dello Stato.

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PROGRAMMA

15.00 introduzione

Annalisa Scopinaro, Presidente di UNIAMO Federazione Italiana Malattie Rare

Domenica Taruscio, Direttore del Centro Nazionale Malattie Rare, Istituto Superiore di Sanità (ISS)

15:05 L’importanza della comunicazione al cittadino

Sergio Iavicoli, Direttore generale della Comunicazione e dei Rapporti europei e internazionali, Ministero della Salute

15:20 Il portale malattierare.gov.it: la nascita, lo sviluppo e le potenzialità

Luca Fornara, Responsabile Filiera Giuridico-Amministrativa e Prodotti WEB-Based – Istituto Poligrafico e Zecca dello Stato

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15:35 Il portale malattierare.gov.it: i contenuti

Marta De Santis, Centro Nazionale Malattie Rare, Istituto Superiore di Sanità (ISS)

15:50 RaraMente, la newsletter al servizio della comunità dei rari

Daniela De Vecchis, Ufficio stampa ISS

Flaminia Serra – Federazione UNIAMO

16:00 Discussione: Spazio ai contributi: come e perché partecipare

Annalisa Scopinaro, Presidente di UNIAMO Federazione Italiana Malattie Rare

Domenica Taruscio, Direttore del Centro Nazionale Malattie Rare, Istituto Superiore di Sanità (ISS)

16:15 Chiusura

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