{"id":987510341,"date":"2024-05-29T10:01:14","date_gmt":"2024-05-29T10:01:14","guid":{"rendered":"https:\/\/branding-science.com\/?p=987510341"},"modified":"2025-05-01T14:52:24","modified_gmt":"2025-05-01T14:52:24","slug":"developpement-dactifs-dans-le-domaine-des-maladies-rares","status":"publish","type":"post","link":"https:\/\/branding-science.com\/fr\/developpement-dactifs-dans-le-domaine-des-maladies-rares\/","title":{"rendered":"Entrer dans des territoires inexplor\u00e9s : comment tirer parti de l'exp\u00e9rience des patients pour renforcer et maximiser les possibilit\u00e9s de d\u00e9veloppement d'actifs dans le domaine des maladies rares ?"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;||50px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Rare-disease-blog-article-05.webp&#8221; alt=&#8221;Pharma insights&#8221; title_text=&#8221;Rare disease &#8211; blog article-05&#8243; align=&#8221;center&#8221; force_fullwidth=&#8221;on&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; border_radii=&#8221;on|20px|20px|20px|20px&#8221; box_shadow_style=&#8221;preset1&#8243; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_2_text_color=&#8221;#3d86ae&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;28px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>6% of people around the world are affected by any of the 7,000+ rare diseases, but only 5% of rare diseases have an approved treatment<\/h2>\n<p>[\/et_pb_text][et_pb_divider color=&#8221;#edb22e&#8221; divider_weight=&#8221;3px&#8221; _builder_version=&#8221;4.23.1&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;10px||5px||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_divider][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]People living with rare diseases undergo a long, arduous and uncertain journey to find, if at all, an appropriate treatment for their medical condition. Having in-depth insights about the details in the journey of people suffering from a rare condition allows pharmaceutical companies to strengthen their research in their Product Development Life Cycle and make much-needed treatments available to patients. In our short article, we will highlight what makes the rare diseases journey stand apart and how best to leverage its specificities to gain an in-depth understanding of the rare diseases patient journey which is needed. [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#3d86ae&#8221; background_image=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Rare-disease-blog-article-01.webp&#8221; background_size=&#8221;custom&#8221; background_image_width=&#8221;57%&#8221; background_position=&#8221;center_right&#8221; max_width=&#8221;100%&#8221; custom_margin=&#8221;|0px||0px|false|false&#8221; custom_padding=&#8221;|0px||0px|false|false&#8221; background_last_edited=&#8221;on|tablet&#8221; background_enable_image_tablet=&#8221;off&#8221; border_radii=&#8221;off|16px|16px||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;2_5,3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; border_radii=&#8221;on|5px|5px|5px|5px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_font_size=&#8221;8px&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;36px&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Prepare to jump<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#FFFFFF&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<strong>With limited patient numbers, varied experiences and difficulty identifying and reaching knowledgeable specialists, a strong and methodical approach is necessary.<\/strong> [\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Rare-disease-blog-article-01.webp&#8221; title_text=&#8221;Rare disease &#8211; blog article-01&#8243; disabled_on=&#8221;off|off|on&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; border_radii=&#8221;on|12px|12px|12px|12px&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#d1e3f2&#8243; background_image=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2023\/11\/Blue-blob.webp&#8221; background_size=&#8221;custom&#8221; background_image_width=&#8221;0%&#8221; background_image_height=&#8221;0%&#8221; background_position=&#8221;bottom_left&#8221; background_horizontal_offset=&#8221;-2%&#8221; background_vertical_offset=&#8221;24%&#8221; max_width=&#8221;100%&#8221; custom_margin=&#8221;|0px||0px|false|false&#8221; custom_padding=&#8221;|0px||0px|false|false&#8221; background_last_edited=&#8221;on|tablet&#8221; background_enable_image_tablet=&#8221;off&#8221; border_radii=&#8221;off|||16px|16px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;2_5,3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_text_color=&#8221;#000000&#8243; header_font_size=&#8221;8px&#8221; header_2_text_color=&#8221;#182a39&#8243; header_2_font_size=&#8221;36px&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>How to find a needle in a haystack?<\/h2>\n<p>[\/et_pb_text][et_pb_divider color=&#8221;#edb22e&#8221; divider_weight=&#8221;3px&#8221; _builder_version=&#8221;4.23.1&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;10px||5px||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_divider][\/et_pb_column][et_pb_column type=&#8221;3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text module_class=&#8221;list_spacing&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#182a39&#8243; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li>\n<p class=\"p1\">The framing phase of a rare disease journey project is paramount and should be focused on developing a \u2018strategic and collaborative approach\u2019, starting with a strong recruitment plan.<\/p>\n<p>This should explore avenues of collaboration available, as well as timelines and the number of engagements required, to then lay a plan of approaches to maximise reaching relevant patients and HCPs. For instance, previously, to learn about patient experiences in an ultra-rare eye disease on tight timelines, we opted for a cohesive approach between <span class=\"s1\">Branding Science, our fieldwork team and client teams with pre-existing<\/span> relationships with PAGs. This allowed us to increase our reach and provide an opportunity to find a strong pool of those challenging recruits, with varied experiences, within the timeframe.<\/li>\n<li>\n<p class=\"p1\"><span class=\"s1\">Similarly, to maximise interactions with those rare recruits, and before<\/span> communicating with them, we immerse ourselves in their online environment to build a frame of the patient experience through a four-dimensional lens focusing on the emotional, practical, social and treatment burden aspects of their journey. By analysing the available resources, public forums and <span class=\"s1\">conversations, we are able to build a repository of data and direct patient feedback.<\/span> <span class=\"s2\">This helps to inform the study\u2019s language and content and identifies topics<\/span> which are most relevant to explore further in our primary research.<\/p>\n<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#edb22e&#8221; background_image=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Rare-disease-blog-article-03.webp&#8221; background_size=&#8221;custom&#8221; background_image_width=&#8221;57%&#8221; background_position=&#8221;center_right&#8221; max_width=&#8221;100%&#8221; custom_margin=&#8221;100px|0px||0px|false|false&#8221; custom_padding=&#8221;|0px||0px|false|false&#8221; background_last_edited=&#8221;on|tablet&#8221; background_enable_image_tablet=&#8221;off&#8221; border_radii=&#8221;off|16px|16px||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;2_5,3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; border_radii=&#8221;on|5px|5px|5px|5px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_font_size=&#8221;8px&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;36px&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>One size does not fit all!<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#FFFFFF&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<strong>The Rare Disease (RD) journey is less unified\/less predictable than non-RD patient journeys, and very often more complex.<\/strong> [\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Rare-disease-blog-article-03.webp&#8221; title_text=&#8221;Rare disease &#8211; blog article-03&#8243; disabled_on=&#8221;off|off|on&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; border_radii=&#8221;on|12px|12px|12px|12px&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#fbf0d5&#8243; background_enable_image=&#8221;off&#8221; background_size=&#8221;custom&#8221; background_image_width=&#8221;0%&#8221; background_image_height=&#8221;0%&#8221; background_position=&#8221;bottom_left&#8221; background_horizontal_offset=&#8221;-2%&#8221; background_vertical_offset=&#8221;24%&#8221; max_width=&#8221;100%&#8221; custom_margin=&#8221;|0px|100px|0px|false|false&#8221; custom_padding=&#8221;|0px|50px|0px|false|false&#8221; border_radii=&#8221;off|||16px|16px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;2_5,3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_text_color=&#8221;#000000&#8243; header_font_size=&#8221;8px&#8221; header_2_text_color=&#8221;#182a39&#8243; header_2_font_size=&#8221;36px&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>What makes rare disease patient journeys more complex?<\/h2>\n<p>[\/et_pb_text][et_pb_divider color=&#8221;#3d86ae&#8221; divider_weight=&#8221;3px&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;10px||5px||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_divider][\/et_pb_column][et_pb_column type=&#8221;3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text module_class=&#8221;list_spacing&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#182a39&#8243; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li>\n<p class=\"p1\">Learnings are derived from a pool of RD patients with more divergent experiences than non-RD patients, coupled with extrinsic factors such as differences in country-specific approaches to rare disease and access to care.<\/p>\n<\/li>\n<li>\n<p class=\"p1\">The road to diagnosis is fraught with uncertainty, misdiagnoses and frustration. Lack of recognition of the disease by a primary care physician (PCP) leads to physician handoff from one specialist to another, resulting in months to possibly years before an RD specialist pinpoints the correct diagnosis. Thus, the RD patient journey is more comparable to a continual quest marred by disappointment vs. a journey of definitive steps.<\/p>\n<\/li>\n<li>\n<p class=\"p1\">There are typically more highs than lows in RD patient journeys. Diagnosis, usually characterised as an emotional high point for most non-RD patients, remains a low point punctuated by physicians\u2019 paucity of knowledge about the condition and the uncertainty of a course of treatment.<\/p>\n<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_text_color=&#8221;#000000&#8243; header_font_size=&#8221;8px&#8221; header_2_text_color=&#8221;#182a39&#8243; header_2_font_size=&#8221;36px&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 style=\"text-align: center;\">An example of our 360\u00b0 patient journey approach for Rare Disease X:<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_3,1_3,1_3&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#44637b&#8221; custom_padding=&#8221;30px||30px||false|false&#8221; border_radii=&#8221;on|12px|12px|12px|12px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/How.svg&#8221; title_text=&#8221;How&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; max_width=&#8221;50%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#FFFFFF&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;32px&#8221; background_color=&#8221;RGBA(255,255,255,0)&#8221; max_width=&#8221;100%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; border_radii=&#8221;on|8px|8px|8px|8px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 style=\"text-align: center;\"><\/h2>\n<h2 style=\"text-align: center;\">How<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#FFFFFF&#8221; max_width=&#8221;75%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p class=\"p1\" style=\"text-align: center;\">We captured the resilience of the fragile, distraught patients by highlighting the disappointing HCP experiences, and uncovered physician and patient pain points and unmet needs gaps through a transactional and emotional lens.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#3d86ae&#8221; custom_padding=&#8221;30px||30px||false|false&#8221; border_radii=&#8221;on|12px|12px|12px|12px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/What.svg&#8221; title_text=&#8221;What&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; max_width=&#8221;50%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#FFFFFF&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;32px&#8221; background_color=&#8221;RGBA(255,255,255,0)&#8221; max_width=&#8221;100%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; border_radii=&#8221;on|8px|8px|8px|8px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 style=\"text-align: center;\"><\/h2>\n<h2 style=\"text-align: center;\">What<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#FFFFFF&#8221; max_width=&#8221;75%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p class=\"p1\" style=\"text-align: center;\">Through patient pre-tasks, patient and physician projective storytelling techniques, patient video diaries and patient online community boards, we fully immersed our client in <span class=\"s1\">the patient and HCP <b>current experience <\/b>of <b>Rare Disease X<\/b>,<\/span> and the slow tenuous path to get there.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#edb22e&#8221; custom_padding=&#8221;30px||30px||false|false&#8221; border_radii=&#8221;on|12px|12px|12px|12px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Outcomes.svg&#8221; title_text=&#8221;Outcomes&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; max_width=&#8221;50%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#FFFFFF&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;32px&#8221; background_color=&#8221;RGBA(255,255,255,0)&#8221; max_width=&#8221;100%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; border_radii=&#8221;on|8px|8px|8px|8px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 style=\"text-align: center;\"><\/h2>\n<h2 style=\"text-align: center;\">Outcomes<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#FFFFFF&#8221; max_width=&#8221;75%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p class=\"p1\" style=\"text-align: center;\"><span class=\"s1\">We provided clear insight into the changing dynamics of Rare Disease X, its impact on both patients and HCPs, and the disconnects and unmet gaps. Our recommendations provided strategic support in confirming meaningful clinical trial endpoints for a pipeline product for <b>Rare Disease X<\/b>, as well as early thoughts regarding patient-centric and HCP-centric brand planning, and unbranded and branded educational campaigns (based on both clinical and emotional pain points). <\/span><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#3d86ae&#8221; background_image=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Rare-disease-blog-article-04.webp&#8221; background_size=&#8221;custom&#8221; background_image_width=&#8221;57%&#8221; background_position=&#8221;center_right&#8221; max_width=&#8221;100%&#8221; custom_margin=&#8221;|0px||0px|false|false&#8221; custom_padding=&#8221;|0px||0px|false|false&#8221; background_last_edited=&#8221;on|tablet&#8221; background_enable_image_tablet=&#8221;off&#8221; border_radii=&#8221;off|16px|16px||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;2_5,3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; border_radii=&#8221;on|5px|5px|5px|5px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_font_size=&#8221;8px&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;36px&#8221; max_width=&#8221;68%&#8221; max_width_tablet=&#8221;100%&#8221; max_width_phone=&#8221;100%&#8221; max_width_last_edited=&#8221;on|phone&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Treatment is a merry-go-round<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#FFFFFF&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<strong>Rare disease treatment pathways are an arduous process, with many treatments tried, characterised by a lack of success and often a lack of consistency in approach.<\/strong> [\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Rare-disease-blog-article-04.webp&#8221; title_text=&#8221;Rare disease &#8211; blog article-04&#8243; disabled_on=&#8221;off|off|on&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; border_radii=&#8221;on|12px|12px|12px|12px&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#d1e3f2&#8243; background_enable_image=&#8221;off&#8221; background_size=&#8221;custom&#8221; background_image_width=&#8221;0%&#8221; background_image_height=&#8221;0%&#8221; background_position=&#8221;bottom_left&#8221; background_horizontal_offset=&#8221;-2%&#8221; background_vertical_offset=&#8221;24%&#8221; max_width=&#8221;100%&#8221; custom_margin=&#8221;|0px|100px|0px|false|false&#8221; custom_padding=&#8221;|0px|50px|0px|false|false&#8221; border_radii=&#8221;off|||16px|16px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;2_5,3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_text_color=&#8221;#000000&#8243; header_font_size=&#8221;8px&#8221; header_2_text_color=&#8221;#182a39&#8243; header_2_font_size=&#8221;36px&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>What characterises an RD patient\u2019s treatment journey?<\/h2>\n<p>[\/et_pb_text][et_pb_divider color=&#8221;#edb22e&#8221; divider_weight=&#8221;3px&#8221; _builder_version=&#8221;4.23.1&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;10px||5px||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_divider][\/et_pb_column][et_pb_column type=&#8221;3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text module_class=&#8221;list_spacing&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#182a39&#8243; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li>\n<p class=\"p1\"><span class=\"s1\">At the initial diagnosis or misdiagnosis stage, the carousel of treatment begins, often with<\/span> the primary aim being to address threatening symptoms first.<\/p>\n<\/li>\n<li class=\"p1\">\n<p class=\"p1\"><span class=\"s1\">Generally, treatments must be switched often, particularly at the beginning, because: <\/span><\/p>\n<p class=\"p1\"><span class=\"s1\"><\/span><span class=\"s1\"><\/span><span class=\"s1\"><\/span>&#8211; The treatment is ineffective at addressing symptoms.<\/p>\n<p class=\"p1\">&#8211; The treatment only addresses symptoms temporarily.<\/p>\n<p class=\"p1\">&#8211; The treatment is no longer beneficial as the disease progresses and new symptoms appear.<\/p>\n<\/li>\n<li class=\"p1\">\n<p class=\"p1\">Patients are often passed around different HCPs who prescribe new treatments in an attempt to control symptoms.<\/p>\n<p class=\"p1\">&#8211; From a GP to a suite of different consultants and specialists, until they eventually meet a specialist they will keep a longer relationship with.<\/p>\n<p class=\"p1\">&#8211; During this time, many patients and\/or caregivers seek the support of Patient Advocacy Groups (PAGs).<\/p>\n<p class=\"p1\">&#8211; Family members also act as supporting figures during this time.<\/p>\n<\/li>\n<li>\n<p class=\"p1\">During the carousel of treatment, tensions between HCPs and patients can begin to build. The patient can become frustrated with the trial-and-error approach to their care. This can lead to a variety of situations:<\/p>\n<p class=\"p1\"><span class=\"s1\">&#8211; Patients start their own research and begin advocating for themselves with the help of PAGs. <\/span><\/p>\n<p class=\"p1\"><span class=\"s1\"><\/span>&#8211; All stakeholders become drained and HCPs become equally frustrated with not being able to help more.<\/p>\n<p class=\"p1\"><span class=\"s1\">&#8211; Patients and carers become wary of new treatment options presented to them.<\/span><\/p>\n<\/li>\n<li>\n<p class=\"p1\"><span class=\"s1\">Frustration continues to build after the correct diagnosis and treatment plan is established. Specialist care can be sparse, meaning patients must travel greater distances for their care. <\/span><\/p>\n<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_text_color=&#8221;#000000&#8243; header_font_size=&#8221;8px&#8221; header_2_text_color=&#8221;#182a39&#8243; header_2_font_size=&#8221;36px&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 style=\"text-align: center;\">An example of our 360\u00b0 patient journey approach for Rare Disease X:<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_3,1_3,1_3&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#44637b&#8221; custom_padding=&#8221;30px||30px||false|false&#8221; border_radii=&#8221;on|12px|12px|12px|12px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/How.svg&#8221; title_text=&#8221;How&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; max_width=&#8221;50%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#FFFFFF&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;32px&#8221; background_color=&#8221;RGBA(255,255,255,0)&#8221; max_width=&#8221;100%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; border_radii=&#8221;on|8px|8px|8px|8px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 style=\"text-align: center;\"><\/h2>\n<h2 style=\"text-align: center;\">How<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#FFFFFF&#8221; max_width=&#8221;75%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p class=\"p1\" style=\"text-align: center;\">Obtain perspective from the HCP, patient and caregiver, capturing 360\u00b0 insights from both an emotional and transactional lens.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#3d86ae&#8221; custom_padding=&#8221;30px||30px||false|false&#8221; border_radii=&#8221;on|12px|12px|12px|12px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/What.svg&#8221; title_text=&#8221;What&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; max_width=&#8221;50%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#FFFFFF&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;32px&#8221; background_color=&#8221;RGBA(255,255,255,0)&#8221; max_width=&#8221;100%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; border_radii=&#8221;on|8px|8px|8px|8px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 style=\"text-align: center;\"><\/h2>\n<h2 style=\"text-align: center;\">What<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#FFFFFF&#8221; max_width=&#8221;75%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p class=\"p1\" style=\"text-align: center;\">Compare perspectives from HCPs and from <span class=\"s1\">patients through projective techniques, pre-tasks <\/span>and storytelling.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#edb22e&#8221; custom_padding=&#8221;30px||30px||false|false&#8221; border_radii=&#8221;on|12px|12px|12px|12px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Outcomes.svg&#8221; title_text=&#8221;Outcomes&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; max_width=&#8221;50%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#FFFFFF&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;32px&#8221; background_color=&#8221;RGBA(255,255,255,0)&#8221; max_width=&#8221;100%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; border_radii=&#8221;on|8px|8px|8px|8px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 style=\"text-align: center;\"><\/h2>\n<h2 style=\"text-align: center;\">Outcomes<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#FFFFFF&#8221; max_width=&#8221;75%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p class=\"p1\" style=\"text-align: center;\">We uncovered any real-life emotional and transactional disconnects and tension points<span class=\"s1\"> between HCP and patient\/caregivers. This helped start to develop effective unbranded and branded <\/span><span class=\"s2\">educational material about the asset. <\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\">We identified types of support (emotional, <span class=\"s3\">psychological) which patients still needed and helped to <\/span>inform the client\u2019s patient support programme.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#edb22e&#8221; background_image=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Rare-disease-blog-article-02.webp&#8221; background_size=&#8221;custom&#8221; background_image_width=&#8221;57%&#8221; background_position=&#8221;center_right&#8221; max_width=&#8221;100%&#8221; custom_margin=&#8221;100px|0px||0px|false|false&#8221; custom_padding=&#8221;|0px||0px|false|false&#8221; background_last_edited=&#8221;on|tablet&#8221; background_enable_image_tablet=&#8221;off&#8221; border_radii=&#8221;off|16px|16px||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;2_5,3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; custom_margin_tablet=&#8221;&#8221; custom_margin_phone=&#8221;0px||||false|false&#8221; custom_margin_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;0px||||false|false&#8221; border_radii=&#8221;on|5px|5px|5px|5px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_font_size=&#8221;8px&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;36px&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>A reverse patient\/HCP dynamic<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#FFFFFF&#8221; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<strong>Rare disease patients are often much more informed than those with diseases that aren\u2019t rare, while, on the contrary, most HCPs know less than average, even for specialists. This creates a reverse dynamic that can be leveraged for more insightful research into rare conditions.<\/strong> [\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Rare-disease-blog-article-02.webp&#8221; title_text=&#8221;Rare disease &#8211; blog article-02&#8243; disabled_on=&#8221;off|off|on&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; border_radii=&#8221;on|12px|12px|12px|12px&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#fbf0d5&#8243; background_image=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2023\/11\/Blue-blob.webp&#8221; background_size=&#8221;custom&#8221; background_image_width=&#8221;0%&#8221; background_image_height=&#8221;0%&#8221; background_position=&#8221;bottom_left&#8221; background_horizontal_offset=&#8221;-2%&#8221; background_vertical_offset=&#8221;24%&#8221; max_width=&#8221;100%&#8221; custom_margin=&#8221;|0px||0px|false|false&#8221; custom_padding=&#8221;|0px||0px|false|false&#8221; background_last_edited=&#8221;on|tablet&#8221; background_enable_image_tablet=&#8221;off&#8221; border_radii=&#8221;off|||16px|16px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#182a39&#8243; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p class=\"p1\"><strong><span class=\"s1\">Because of the \u2018rare\u2019 essence of their disease, often, a large majority of patients, carers and sometimes extended family\/friends have to become self-taught or self-<\/span>researched experts. This can be a stark contrast to most of the HCPs they may meet during their lifetime, who are unaware for most of their disease, particularly until they can meet a knowledgeable specialist. This creates a requirement for patients\/carers to advocate for themselves and explain the background of their condition.<\/strong><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;2_5,3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; width=&#8221;90%&#8221; max_width=&#8221;2560px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_text_color=&#8221;#000000&#8243; header_font_size=&#8221;8px&#8221; header_2_text_color=&#8221;#182a39&#8243; header_2_font_size=&#8221;36px&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>How can this impact your research approaches?<\/h2>\n<p>[\/et_pb_text][et_pb_divider color=&#8221;#edb22e&#8221; divider_weight=&#8221;3px&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;10px||5px||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_divider][\/et_pb_column][et_pb_column type=&#8221;3_5&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text module_class=&#8221;list_spacing&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;Roboto|300|||||||&#8221; text_text_color=&#8221;#182a39&#8243; custom_margin=&#8221;10px||||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li>\n<p class=\"p1\"><span class=\"s1\">The experience often makes patients, carers and patient support groups great <\/span>advocates\/experts in their condition, who feel very strongly about having their voices heard. It is therefore paramount to leverage this keenness and knowledge into cohesive approaches and to consider involving them in research that could often be limited to only HCPs. For instance, we have, in the past, empowered the rare disease patient voice to co-create and collaborate in the development of HCP-aimed communication materials, focused on raising awareness of their condition, and were able to overlay <span class=\"s2\">their experiences and feedback into the final version of communications. Another key area where <\/span><span class=\"s1\">patient voice can be a lever of credibility is medical publishing, which brings another lens<\/span> highlighting not only the scientific side but the real-life daily impact of conditions on patients.<\/p>\n<p class=\"p1\">On the other side of the spectrum, it is equally paramount to take into account the often lack of or limited knowledge from the wide majority of healthcare professionals (HCPs), or even specialists. This reality often means that it will be key when framing research to include KOLs or expert HCPs, but also to involve and hear from real-life jobbing HCPs, <span class=\"s1\">who might be faced with RD patients. Specifically, key aspects of the patient journey needs to address and confront this discrepancy in knowledge to make sure that areas such as route to diagnosis, key behaviours upon admission\/presentation of <\/span>patients, challenges related to diagnosis or referral to experts are understood. This is particularly relevant as diagnosis is a key hurdle in their RD journey but is often hindered further by the fact that the HCPs meeting patients first\/earlier in their journey tend to <span class=\"s1\">be the least aware of their rare condition; and it is not until they are referred or find an expert that they are then diagnosed. This tension is often frustrating on all parts<\/span>, patients, HCPs and disease experts, as they try to understand how to best support all stakeholders involved in the process, leading to enhanced care in rare disease.<\/p>\n<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;1_3,2_3&#8243; make_equal=&#8221;on&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_3&#8243; module_class=&#8221;vertical-align&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/branding-science.com\/wp-content\/uploads\/2024\/05\/Asset-1.png&#8221; title_text=&#8221;Asset 1&#8243; align=&#8221;center&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][et_pb_column type=&#8221;2_3&#8243; module_class=&#8221;vertical-align&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;22px&#8221; header_2_text_color=&#8221;#3d86ae&#8221; header_2_font_size=&#8221;32px&#8221; text_orientation_tablet=&#8221;center&#8221; text_orientation_phone=&#8221;center&#8221; text_orientation_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2><strong>This article was written by:<\/strong><\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; header_2_font=&#8221;|300|||||||&#8221; header_2_font_size=&#8221;25px&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||10px||false|false&#8221; text_orientation_tablet=&#8221;center&#8221; text_orientation_phone=&#8221;center&#8221; text_orientation_last_edited=&#8221;on|tablet&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 class=\"p1\"><span class=\"s1\">Anastasia Pecquet<\/span><\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_line_height=&#8221;1em&#8221; header_2_font=&#8221;|300|||||||&#8221; text_orientation_tablet=&#8221;center&#8221; text_orientation_phone=&#8221;center&#8221; text_orientation_last_edited=&#8221;on|tablet&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p class=\"p1\"><strong><span class=\"s1\">Associate Director <\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">anastasia.pecquet@branding-science.com<\/span><\/p>\n<p>[\/et_pb_text][et_pb_divider color=&#8221;#edb22e&#8221; divider_weight=&#8221;3px&#8221; _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;10px||5px||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_divider][et_pb_text _builder_version=&#8221;4.25.1&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#44637b&#8221; text_line_height=&#8221;1em&#8221; header_2_font=&#8221;|300|||||||&#8221; text_orientation_tablet=&#8221;center&#8221; text_orientation_phone=&#8221;center&#8221; text_orientation_last_edited=&#8221;on|tablet&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p class=\"p1\"><span class=\"s1\"><b>Rare Disease Centre of Excellence<\/b><\/span><\/p>\n<p class=\"p1\"><span class=\"s2\">raredisease@branding-science.com <\/span><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>6% of people around the world are affected by any of the 7,000+ rare diseases, but only 5% of rare diseases have an approved treatment People living with rare diseases undergo a long, arduous and uncertain journey to find, if at all, an appropriate treatment for their medical condition. Having in-depth insights about the details [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":987510387,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"<p>Here at Branding Science we have been fortunate to assist numerous companies in conducting advisory boards, fostering many insightful discussions with a range of healthcare professionals.<\/p><p>However, these conversations aren\u2019t always a breeze! That\u2019s why we\u2019ve distilled some of our key strategies to ease tension and promote fruitful discussions during ad boards.<\/p><p>In our latest article, we\u2019ve shared our top seven tips to bear in mind if you want to conduct a successful ad board.<\/p><p>To read our thoughts in full, <a href=\"https:\/\/branding-science.com\/\/wp-content\/uploads\/2023\/11\/HCP-meeting-PDF_V1.1.pdf\" target=\"_blank\" rel=\"noopener\">click here<\/a>.<\/p>","_et_gb_content_width":"","footnotes":""},"categories":[18,1],"tags":[],"class_list":["post-987510341","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-articles","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Leveraging patient journey insights for rare diseases<\/title>\n<meta name=\"description\" content=\"How to leverage patient journey insights to strengthen and maximise your opportunity for asset development in rare diseases.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/branding-science.com\/fr\/developpement-dactifs-dans-le-domaine-des-maladies-rares\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Leveraging patient journey insights for rare diseases\" \/>\n<meta property=\"og:description\" content=\"How to leverage patient journey insights to strengthen and maximise your opportunity for asset development in rare diseases.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/branding-science.com\/fr\/developpement-dactifs-dans-le-domaine-des-maladies-rares\/\" \/>\n<meta property=\"og:site_name\" content=\"Branding Science\" \/>\n<meta property=\"article:published_time\" content=\"2024-05-29T10:01:14+00:00\" \/>\n<meta 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