{"id":1084,"date":"2023-02-06T13:16:03","date_gmt":"2023-02-06T13:16:03","guid":{"rendered":"https:\/\/chungjansensyndrome.eu\/?page_id=1084"},"modified":"2026-08-09T09:20:23","modified_gmt":"2026-08-09T09:20:23","slug":"about-us","status":"publish","type":"page","link":"https:\/\/chungjansensyndrome.eu\/en\/about-us\/","title":{"rendered":"About us"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; custom_padding_last_edited=&#8221;on|phone&#8221; admin_label=&#8221;Title Section&#8221; _builder_version=&#8221;4.20.2&#8243; _module_preset=&#8221;default&#8221; background_enable_color=&#8221;off&#8221; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_stops=&#8221;rgba(13,75,126,0.95) 0%|rgba(13,75,126,0.95) 100%&#8221; background_color_gradient_overlays_image=&#8221;on&#8221; background_image=&#8221;https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/02\/dna-1811955_1920.jpg&#8221; custom_margin=&#8221;-200px||||false|false&#8221; custom_padding=&#8221;250px||||false|false&#8221; custom_padding_tablet=&#8221;250px||||false|false&#8221; custom_padding_phone=&#8221;190px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.19.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.19.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text admin_label=&#8221;About This Site&#8221; _builder_version=&#8221;4.20.4&#8243; text_font=&#8221;||||||||&#8221; header_font=&#8221;Montserrat|700|||||||&#8221; header_text_align=&#8221;center&#8221; header_text_color=&#8221;#f7f7f7&#8243; header_font_size=&#8221;60px&#8221; header_line_height=&#8221;1.3em&#8221; custom_margin=&#8221;||||false|false&#8221; header_font_size_tablet=&#8221;60px&#8221; header_font_size_phone=&#8221;30px&#8221; header_font_size_last_edited=&#8221;on|phone&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h1>About This Site<\/h1>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;Text Overlap Section&#8221; _builder_version=&#8221;4.20.4&#8243; _module_preset=&#8221;default&#8221; background_enable_color=&#8221;off&#8221; background_enable_image=&#8221;off&#8221; width=&#8221;80%&#8221; width_tablet=&#8221;80%&#8221; width_phone=&#8221;100%&#8221; width_last_edited=&#8221;on|phone&#8221; max_width=&#8221;1080px&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;-50px||50px||false|false&#8221; custom_margin_tablet=&#8221;-50px||50px||false|false&#8221; custom_margin_phone=&#8221;0px||0px||false|false&#8221; custom_margin_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;||||false|false&#8221; box_shadow_style=&#8221;preset1&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;2&#8243; make_equal=&#8221;on&#8221; _builder_version=&#8221;4.20.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#FFFFFF&#8221; width_tablet=&#8221;&#8221; width_phone=&#8221;90%&#8221; width_last_edited=&#8221;on|phone&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px|0px|0px|0px|false|false&#8221; custom_css_main_element=&#8221;z-index:1000&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.19.5&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#FFFFFF&#8221; custom_padding=&#8221;|0px|||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text admin_label=&#8221;What is Chung-Jansen Syndrome?&#8221; _builder_version=&#8221;4.19.5&#8243; text_font=&#8221;Montserrat|500||on|||||&#8221; text_text_color=&#8221;#353740&#8243; text_font_size=&#8221;16px&#8221; text_letter_spacing=&#8221;3px&#8221; custom_margin=&#8221;||||false|false&#8221; animation_direction=&#8221;bottom&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]About This Site[\/et_pb_text][et_pb_divider color=&#8221;#E02B20&#8243; divider_weight=&#8221;3px&#8221; _builder_version=&#8221;4.19.5&#8243; _module_preset=&#8221;default&#8221; max_width=&#8221;60px&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_divider][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.20.4&#8243; _module_preset=&#8221;default&#8221; width_tablet=&#8221;&#8221; width_phone=&#8221;90%&#8221; width_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.19.5&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.21.0&#8243; text_font=&#8221;Montserrat||||&#8221; text_text_color=&#8221;#747d88&#8243; text_line_height=&#8221;1.8em&#8221; link_font=&#8221;|700|||||||&#8221; link_text_color=&#8221;#0d4b7e&#8221; header_font=&#8221;||||||||&#8221; text_orientation=&#8221;justified&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;||||false|false&#8221; animation_direction=&#8221;top&#8221; text_font_size_tablet=&#8221;&#8221; text_font_size_phone=&#8221;16px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>After receiving the diagnosis of Chung-Jansen Syndrome, patients or their parents\/caregivers are often left with questions like \u2018what do we do now?\u2019 and \u2018what will the future look like?\u2019.<\/p>\n<p>This website was created to provide support for families and loved ones of people effected by a <em>PHIP<\/em> related disorder. It aims to give specific, up-to-date information about what the syndrome is and where patients or their parents\/caregivers can go to when they have questions about the syndrome or want to get (health)care. This website also tries to give insight into ways of dealing with possible health and\/or behavioural problems.<\/p>\n<p>In the past two years, the number of people diagnosed with the syndrome has increased to more than 900 worldwide. This number will continue to grow as more people are tested.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.19.5&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.20.4&#8243; text_font=&#8221;Montserrat||||&#8221; text_text_color=&#8221;#747d88&#8243; text_line_height=&#8221;1.8em&#8221; link_font=&#8221;|700|||||||&#8221; link_text_color=&#8221;#0d4b7e&#8221; header_font=&#8221;||||||||&#8221; text_orientation=&#8221;justified&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;||||false|false&#8221; animation_direction=&#8221;top&#8221; text_font_size_tablet=&#8221;&#8221; text_font_size_phone=&#8221;16px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Many patients or their parents\/caregivers have joined the international Facebook group <a href=\"https:\/\/www.facebook.com\/groups\/1486618044722353\" target=\"blank\" rel=\"noopener noreferrer\"><em>PHIP<\/em> Kids (Chung Jansen syndrome)<\/a>. Within the group, patients and\/or their parents\/caregivers share information and experiences with each other, and provide support in dealing with daily challenges.<\/p>\n<p><span data-olk-copy-source=\"MessageBody\">There are now also several Facebook groups across Europe, <\/span>which have the same goals (to unite parents or people with the syndrome) but with the main focus on which is happening in those countries .<\/p>\n<p><em>PHIP<\/em> Kids is in constant communication with the lab of geneticist Dr. Wendy Chung at Columbia University Medical Centre in New York City, where ongoing research is being done on <em>PHIP<\/em> gene variations.<\/p>\n<p>Because the discovery and testing for the syndrome is still pretty new, there is a lot to learn about the how, what and why of the syndrome. It is therefore desirable that in addition to research in the United States, further research is also carried out here in the Netherlands or Europe.<\/p>\n<p>For additional information about the syndrome or this website please contact <a href=\"mailto:info@chungjansensyndrome.eu\">info@chungjansensyndrome.eu<\/a><\/p>\n<p>You are welcome to share any information on the syndrome that can be usefull such as (research)projects PHIP is involved in.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>About This SiteAbout This SiteAfter receiving the diagnosis of Chung-Jansen Syndrome, patients or their parents\/caregivers are often left with questions like \u2018what do we do now?\u2019 and \u2018what will the future look like?\u2019. This website was created to provide support for families and loved ones of people effected by a PHIP related disorder. It aims [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"class_list":["post-1084","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/pages\/1084","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/comments?post=1084"}],"version-history":[{"count":12,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/pages\/1084\/revisions"}],"predecessor-version":[{"id":210438,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/pages\/1084\/revisions\/210438"}],"wp:attachment":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/media?parent=1084"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}