{"id":2247,"date":"2024-04-09T16:40:19","date_gmt":"2024-04-09T15:40:19","guid":{"rendered":"https:\/\/www.rareminds.org\/?page_id=2247"},"modified":"2026-07-29T17:25:47","modified_gmt":"2026-07-29T16:25:47","slug":"looking-for-a-diagnosis","status":"publish","type":"page","link":"https:\/\/www.rareminds.org\/fr\/wellbeing-hub\/diagnosis\/looking-for-a-diagnosis\/","title":{"rendered":"\u00c0 la recherche d'un diagnostic"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; custom_padding_last_edited=&#8221;on|desktop&#8221; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_direction=&#8221;90deg&#8221; background_color_gradient_stops=&#8221;#ffffff 70%|gcid-cda4ad62-552d-4861-ac19-bc0028373e46 73%&#8221; custom_margin=&#8221;0px||||false|false&#8221; custom_padding=&#8221;0px|5vw|0px||false|false&#8221; custom_padding_tablet=&#8221;||0px||false|false&#8221; custom_padding_phone=&#8221;||0px||false|false&#8221; background_last_edited=&#8221;on|desktop&#8221; use_background_color_gradient_tablet=&#8221;off&#8221; use_background_color_gradient_phone=&#8221;off&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-cda4ad62-552d-4861-ac19-bc0028373e46%22:%91%22background_color_gradient_stops%22%93}&#8221;][et_pb_row make_equal=&#8221;on&#8221; module_class=&#8221;reverse-columns-mobile&#8221; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec&#8221; width=&#8221;100%&#8221; max_width=&#8221;100%&#8221; module_alignment=&#8221;left&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;|2vw|50px|8vw|false|false&#8221; border_radii=&#8221;off|||200px|&#8221; border_width_right=&#8221;14px&#8221; border_color_right=&#8221;gcid-cf9415ef-e483-4e35-a620-b796a7d52716&#8243; box_shadow_style=&#8221;preset4&#8243; box_shadow_horizontal=&#8221;13px&#8221; box_shadow_vertical=&#8221;0px&#8221; box_shadow_color=&#8221;gcid-9cdde9ee-f44a-4873-b70d-fc2d55a114a2&#8243; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color%22%93,%22gcid-cf9415ef-e483-4e35-a620-b796a7d52716%22:%91%22border_color_right%22%93,%22gcid-9cdde9ee-f44a-4873-b70d-fc2d55a114a2%22:%91%22box_shadow_color%22%93}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; custom_css_main_element=&#8221;display: flex;||justify-content: space-between;||align-items: center;&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#000000&#8243; text_font_size=&#8221;21px&#8221; text_line_height=&#8221;1.5em&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;48px&#8221; header_line_height=&#8221;1.2em&#8221; header_4_font_size=&#8221;22px&#8221; header_4_line_height=&#8221;1.4em&#8221; width=&#8221;70%&#8221; width_tablet=&#8221;70%&#8221; width_phone=&#8221;80%&#8221; width_last_edited=&#8221;on|phone&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_margin_tablet=&#8221;||||false|false&#8221; custom_margin_phone=&#8221;||||false|false&#8221; custom_margin_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;||||false|false&#8221; text_font_size_tablet=&#8221;21px&#8221; text_font_size_phone=&#8221;16px&#8221; text_font_size_last_edited=&#8221;on|phone&#8221; header_font_size_tablet=&#8221;43px&#8221; header_font_size_phone=&#8221;28px&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; header_4_font_size_tablet=&#8221;17px&#8221; header_4_font_size_phone=&#8221;15px&#8221; header_4_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><span><nav aria-label=\"breadcrumbs\" class=\"rank-math-breadcrumb\"><p><span class=\"last\">Home<\/span><\/p><\/nav><\/span><\/p>\n<h1><\/h1>\n<h1><\/h1>\n<h1><\/h1>\n<h1>Looking for a diagnosis<\/h1>\n<h4>Tips for waiting and going for genetic testing<\/h4>\n<p>[\/et_pb_text][et_pb_image src=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/02\/Rareminds-Wellbeing-Hub-Website-Mockup-Images-Diagnosis.jpg&#8221; title_text=&#8221;Rareminds-Wellbeing-Hub-Website-Mockup-Images-Diagnosis&#8221; align_tablet=&#8221;left&#8221; align_phone=&#8221;left&#8221; align_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; width=&#8221;350px&#8221; width_tablet=&#8221;200px&#8221; width_phone=&#8221;150px&#8221; width_last_edited=&#8221;on|desktop&#8221; module_alignment=&#8221;right&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding_tablet=&#8221;&#8221; custom_padding_phone=&#8221;|10px||10px|false|false&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; module_alignment_tablet=&#8221;right&#8221; module_alignment_phone=&#8221;left&#8221; module_alignment_last_edited=&#8221;on|tablet&#8221; border_radii=&#8221;on|50%|50%|50%|50%&#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; specialty=&#8221;on&#8221; custom_padding_last_edited=&#8221;on|phone&#8221; padding_right_1=&#8221;2vw&#8221; padding_left_2=&#8221;3vw&#8221; padding_top_bottom_link_1=&#8221;false&#8221; padding_top_bottom_link_2=&#8221;false&#8221; padding_left_right_link_1=&#8221;false&#8221; padding_left_right_link_2=&#8221;false&#8221; padding_1_tablet=&#8221;|0px|||false|false&#8221; padding_2_tablet=&#8221;|||0px|false|false&#8221; padding_1_phone=&#8221;|0px|||false|false&#8221; padding_2_phone=&#8221;|||0px|false|false&#8221; padding_1_last_edited=&#8221;on|desktop&#8221; padding_2_last_edited=&#8221;on|desktop&#8221; module_class=&#8221;reverse-columns-mobile&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; background_enable_color=&#8221;off&#8221; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_direction=&#8221;90deg&#8221; background_color_gradient_stops=&#8221;#ffffff 75%|gcid-cda4ad62-552d-4861-ac19-bc0028373e46 75%&#8221; inner_width_tablet=&#8221;85%&#8221; inner_width_phone=&#8221;85%&#8221; inner_width_last_edited=&#8221;on|tablet&#8221; inner_max_width=&#8221;80%&#8221; inner_max_width_tablet=&#8221;&#8221; inner_max_width_phone=&#8221;&#8221; inner_max_width_last_edited=&#8221;on|tablet&#8221; custom_padding=&#8221;24px|0px||0px|false|false&#8221; custom_padding_tablet=&#8221;24px|0px||0px|false|false&#8221; custom_padding_phone=&#8221;53px|0px||0px|false|false&#8221; background_last_edited=&#8221;on|desktop&#8221; use_background_color_gradient_tablet=&#8221;off&#8221; use_background_color_gradient_phone=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-cda4ad62-552d-4861-ac19-bc0028373e46%22:%91%22background_color%22,%22background_color_gradient_stops%22%93}&#8221;][et_pb_column type=&#8221;3_4&#8243; specialty_columns=&#8221;3&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_row_inner _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600|||on||||&#8221; link_text_color=&#8221;#000000&#8243; header_2_font=&#8221;||||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; width_tablet=&#8221;auto&#8221; width_phone=&#8221;auto&#8221; width_last_edited=&#8221;on|tablet&#8221; custom_margin_tablet=&#8221;|2vw|||false|false&#8221; custom_margin_phone=&#8221;|2vw|||false|false&#8221; custom_margin_last_edited=&#8221;on|tablet&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Finding a diagnosis<\/h2>\n<p><span style=\"font-weight: 400;\">Sometimes the diagnosis of a rare condition may happen unexpectedly or &#8216;out of the blue.&#8217; More usually, it is after a long period of trying to understand different symptoms, feeling unwell for some time, or just being aware &#8216;something is wrong&#8217;.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The term often used to describe this is the &#8216;diagnostic odyssey&#8217; (or the &#8216;journey to diagnosis&#8217;).<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It can often mean seeing lots of different doctors, receiving mis-diagnoses, or even being told your symptoms (or your child&#8217;s) are \u2018all in your head&#8217;.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The journey to diagnosis can be a frustrating time. <\/span><\/p>\n<p>[\/et_pb_text][et_pb_image src=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2023\/10\/2-Eurordis-diagnosis-graphic.jpeg&#8221; alt=&#8221;Image shows the journey to getting a diagnosis of a rare condition. The infographic demonstrates the diagnostic odyssey many people experience on a daily basis and presents existing resources from CETF member organisations to support patients on this journey.&#8221; title_text=&#8221;Eurordis diagnosis graphic&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||||false|false&#8221; enable_caption_text=&#8221;on&#8221; image_details_padding=&#8221;10px|10px|10px|10px|true|true&#8221; image_caption_color=&#8221;#000000&#8243; image_caption_size=&#8221;12px&#8221; image_caption_letterspace=&#8221;1px&#8221; image_caption_lineheight=&#8221;1em&#8221; border_radii=&#8221;on|20px|20px|20px|20px&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; header_2_line_height=&#8221;2em&#8221; global_colors_info=&#8221;{%22gcid-56bff3fb-e765-4a78-b152-15a836421100%22:%91%22header_5_text_color%22%93}&#8221;]<\/p>\n<h2>How genetic testing can help<\/h2>\n<h5><span style=\"font-weight: bold;\">Not all rare conditions are genetic, but 8 out 10 are.<\/span><\/h5>\n<p><span style=\"font-weight: 400;\">If genetic testing has been suggested to you then your doctors may think that your, or your child\u2019s, symptoms have been caused by a change in one of your genes or chromosomes.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">These changes may have been inherited from a parent, or may be called \u2018de novo\u2019. De novo means it was a spontaneous change in your, or your child\u2019s, genes that was not inherited.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">A diagnosis received as a result of genetic testing can also help determine if a condition can be passed on, or the likelihood of whether other members of the family may also be affected.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Knowing whether or not you have a genetic condition, and whether or not it can be passed on, can help you to:\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">consider how your rare condition may influence your future life choices<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">access other types of practical support like disability aids, or educational or work support, that can make living with a condition easier<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">make informed choices about future children and family planning<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">Knowing you have a genetic condition also means you may be offered regular monitoring (tests and scans) to help manage any health problems or symptoms before they become more problematic. It can be very reassuring to know that you, or your child&#8217;s health, will be closely looked after.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Sometimes however, genetic testing might diagnose a condition that is very rare, or the test results are &#8216;inconclusive.&#8217; This means you will still be left with a lot of &#8216;not knowing&#8217; about the future. This can be hard.<\/span><\/p>\n<p>[\/et_pb_text][et_pb_text module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600|||on||||&#8221; link_text_color=&#8221;#000000&#8243; header_2_font=&#8221;||||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; custom_margin_tablet=&#8221;|2vw|||false|false&#8221; custom_margin_phone=&#8221;|2vw|||false|false&#8221; custom_margin_last_edited=&#8221;on|tablet&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Deciding on genetic testing<\/h2>\n<p><span style=\"font-weight: 400;\">Deciding whether or not to have genetic testing is a very personal matter. You might have strong personal or cultural beliefs that influence your decision. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">Finding out that you may have an inherited condition, or one that you can potentially pass on to your children, can bring up a lot of different feelings.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">A genetic counsellor can help you to think about how to talk to other members of your family who may also be impacted if you, or your child, have a rare condition.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Not everyone in your family may want to talk about a genetic diagnosis openly or straight away, or consider having their own genetic testing. Some people prefer to \u2018not know\u2019 &#8211; or not think about it unless they start to show symptoms.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Taking time to process your own thoughts and feelings about having testing in order to make an informed choice, perhaps with the help of a trusted friend or family member, is important.\u00a0<\/span><\/p>\n<p>[\/et_pb_text][et_pb_text module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600|||on||||&#8221; link_text_color=&#8221;#000000&#8243; header_2_font=&#8221;||||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; custom_margin_tablet=&#8221;|2vw|||false|false&#8221; custom_margin_phone=&#8221;|2vw|||false|false&#8221; custom_margin_last_edited=&#8221;on|tablet&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Genetic testing of babies and during pregnancy<\/h2>\n<p><span style=\"font-weight: 400;\">Newborn babies can now be tested shortly after birth for a number of conditions that might impact them early in life. This is called &#8216;newborn screening.&#8217; You will be asked about this by the staff looking after you and your baby. This might be during a time when you are being given lots of information so it\u2019s not uncommon to not remember discussing it.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Some conditions can also be tested for when you are pregnant. This is called &#8216;prenatal testing&#8217;. It can help you to decide how best to manage your pregnancy, whether or not to continue, and all the different options open to you.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">You can find out more information about this from <a href=\"https:\/\/www.arc-uk.org\/\" target=\"_blank\" rel=\"noopener\">ARC. <\/a><\/span><\/p>\n<p>[\/et_pb_text][et_pb_text module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600|||on||||&#8221; link_text_color=&#8221;#000000&#8243; header_2_font=&#8221;||||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; custom_margin_tablet=&#8221;|2vw|||false|false&#8221; custom_margin_phone=&#8221;|2vw|||false|false&#8221; custom_margin_last_edited=&#8221;on|tablet&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Coping with waiting for results<\/h2>\n<p><span style=\"font-weight: 400;\">Waiting for diagnostic or genetic test results can be hard. You might be able to put it out of your mind\u2019, but you might also find yourself thinking a lot about possible outcomes too. This is very understandable.<\/span><\/p>\n<h5><span style=\"font-weight: bold;\"><\/span><\/h5>\n<h5><span style=\"font-weight: bold;\"><\/span><\/h5>\n<h5><span style=\"font-weight: bold;\">What can help?<\/span><\/h5>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">find out the approximate time-frame when you will receive the results<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">ask how you will receive them &#8211; this might be in-person or by letter<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">try not to think too far ahead<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">use coping strategies to help manage worry<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">be especially kind to yourself late at night as this is often the time when worries and anxieties \u2018come calling\u2019<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">if you use the internet to find out more about a condition, try to use trusted information sources such as the NHS or rare condition organisations<\/span><\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_text module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600|||on||||&#8221; link_text_color=&#8221;#000000&#8243; header_2_font=&#8221;||||||||&#8221; header_2_line_height=&#8221;1.4em&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; custom_margin_tablet=&#8221;|2vw|||false|false&#8221; custom_margin_phone=&#8221;|2vw|||false|false&#8221; custom_margin_last_edited=&#8221;on|tablet&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Managing worry and uncertainty about results<\/h2>\n<p><span style=\"font-weight: 400;\">If you read something about a possible condition that upsets or confuses you, remember that not all information is accurate, up-to-date or is &#8216;the whole picture.&#8217;<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">talk to someone who might be able to help, this could be a representative from a rare condition organisation (see our <\/span><strong><a href=\"\/wellbeing-hub\/sources-of-support\/\">Sources of support<\/a><\/strong><span style=\"font-weight: 400;\"> pages) or a hospital doctor or nurse<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">use techniques from our <\/span><a href=\"\/wellbeing-hub\/diagnosis\/you-and-your-emotions\/\">You and your emotions<\/a><span style=\"font-weight: 400;\"> pages<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">remind yourself that we all often cope with difficult news, or the future, much better than we think we will<\/span><\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text module_class=&#8221;wh-text&#8221; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600|||on||||&#8221; link_text_color=&#8221;#000000&#8243; header_2_font=&#8221;||||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; custom_margin_tablet=&#8221;|2vw|||false|false&#8221; custom_margin_phone=&#8221;|2vw|||false|false&#8221; custom_margin_last_edited=&#8221;on|tablet&#8221; custom_padding=&#8221;5%|5%|5%|5%|true|true&#8221; custom_padding_tablet=&#8221;8%||||false|true&#8221; custom_padding_phone=&#8221;20%|5%|9%|5%|false|true&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; custom_css_before=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||background: #D9EBDF;||border-radius: 0 0 0 30px;&#8221; border_radii=&#8221;on|30px|30px|30px|30px&#8221; border_width_all=&#8221;1px&#8221; border_color_all=&#8221;gcid-56bff3fb-e765-4a78-b152-15a836421100&#8243; global_colors_info=&#8221;{%22gcid-56bff3fb-e765-4a78-b152-15a836421100%22:%91%22border_color_all%22%93}&#8221; custom_css_before_last_edited=&#8221;on|tablet&#8221; custom_css_before_tablet=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||&#8221; custom_css_before_phone=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||&#8221;]<\/p>\n<h2>Resources &amp; useful links<\/h2>\n<p><span style=\"font-weight: 400;\"><a href=\"https:\/\/www.arc-uk.org\/\" target=\"_blank\" rel=\"noopener\">ARC<\/a> provides independent information and emotional support through antenatal testing and its consequences.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><a href=\"https:\/\/bsgm.org.uk\/public-patients-families\/\" target=\"_blank\" rel=\"noopener\">The British Society of Genetic Medicine<\/a> (BSGM) has more information about why you might be referred for genetic testing, and what happens at a genetics appointment.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><a href=\"https:\/\/genepeople.org.uk\/support-and-information\/\" target=\"_blank\" rel=\"noopener\">GENEPEOPLE<\/a> provide support and information (including a genetic counsellor helpline for those who are looking for, or dealing with, a diagnosis.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><a href=\"https:\/\/geneticalliance.org.uk\/support-and-information\/genetic-services-and-testing\/\" target=\"_blank\" rel=\"noopener\">Genetic Alliance UK<\/a> have information about how to access genetic testing, and the different types of tests.<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><a href=\"https:\/\/www.undiagnosed.org.uk\/about-us\/\u00a0\" target=\"_blank\" rel=\"noopener\">SWAN UK<\/a> (syndromes without a name) supports families living with genetic conditions so rare that they can be very difficult to diagnose.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><a href=\"https:\/\/rarechromo.org\/\" target=\"_blank\" rel=\"noopener\">Unique<\/a> provides support, information and networking to families affected by rare chromosome and gene disorders. The have a helpline open 5 days a week.\u00a0<\/span><\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][et_pb_column type=&#8221;1_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][pac_divi_table_of_contents title=&#8221;Contents&#8221; collapse_when_sticky=&#8221;on&#8221; marker_position=&#8221;outside&#8221; level_markers_2=&#8221;icons&#8221; icon_marker_2=&#8221;&#x5e;||divi||400&#8243; indent_amount_2=&#8221;0px&#8221; allow_collapse_minimize_tablet=&#8221;off&#8221; allow_collapse_minimize_phone=&#8221;on&#8221; allow_collapse_minimize_last_edited=&#8221;on|desktop&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{%22gcid-cda4ad62-552d-4861-ac19-bc0028373e46%22:%91%22title_container_bg_color%22%93}&#8221;][\/pac_divi_table_of_contents][et_pb_text disabled_on=&#8221;on|on|off&#8221; module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_2_font=&#8221;|700|||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_3_font_size=&#8221;23px&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; width=&#8221;250px&#8221; custom_margin=&#8221;||26px||false|false&#8221; custom_padding=&#8221;|||15px|false|false&#8221; sticky_limit_bottom=&#8221;body&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Related pages<\/h3>\n<p>[\/et_pb_text][et_pb_blurb title=&#8221;Looking for a diagnosis&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;060aeac0-9e6c-40a9-9490-e2d342c3bebb&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjIyNDcifX0=@&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Tips for waiting for and going for genetic testing<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;Early days&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;|700|||on||||&#8221; header_font_size=&#8221;1em&#8221; header_line_height=&#8221;1.2em&#8221; body_text_color=&#8221;#424242&#8243; body_font_size=&#8221;12px&#8221; body_line_height=&#8221;1.5em&#8221; custom_margin=&#8221;||15px||false|false&#8221; custom_padding=&#8221;10px|15px|10px|15px|false|false&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjIzMzYifX0=@&#8221; sticky_limit_bottom=&#8221;body&#8221; custom_css_blurb_title=&#8221;padding-bottom: 5px;&#8221; border_radii=&#8221;on|18px|18px|18px|18px&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;]<\/p>\n<p>Receiving a diagnosis, reimagining the future, pacing yourself<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;Living with a rare condition&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;|700|||on||||&#8221; header_font_size=&#8221;1em&#8221; header_line_height=&#8221;1.2em&#8221; body_text_color=&#8221;#424242&#8243; body_font_size=&#8221;12px&#8221; body_line_height=&#8221;1.5em&#8221; custom_margin=&#8221;||15px||false|false&#8221; custom_padding=&#8221;10px|15px|10px|15px|false|false&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI0MDAifX0=@&#8221; sticky_limit_bottom=&#8221;body&#8221; custom_css_blurb_title=&#8221;padding-bottom: 5px;&#8221; border_radii=&#8221;on|18px|18px|18px|18px&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;]<\/p>\n<p>Rare challenges, \u2018expert by experience\u2019, living as well as possible<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;You and your emotions&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;|700|||on||||&#8221; header_font_size=&#8221;1em&#8221; header_line_height=&#8221;1.2em&#8221; body_text_color=&#8221;#424242&#8243; body_font_size=&#8221;12px&#8221; body_line_height=&#8221;1.5em&#8221; custom_margin=&#8221;||15px||false|false&#8221; custom_padding=&#8221;10px|15px|10px|15px|false|false&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI0MTMifX0=@&#8221; sticky_limit_bottom=&#8221;body&#8221; custom_css_blurb_title=&#8221;padding-bottom: 5px;&#8221; border_radii=&#8221;on|18px|18px|18px|18px&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;]<\/p>\n<p>Acknowledging your feelings, how to manage them, finding hope<\/p>\n<p>[\/et_pb_blurb][et_pb_text disabled_on=&#8221;on|on|off&#8221; module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_2_font=&#8221;|600|||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_3_font_size=&#8221;23px&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; width=&#8221;250px&#8221; custom_margin=&#8221;||26px||false|false&#8221; custom_padding=&#8221;|||15px|false|false&#8221; sticky_limit_bottom=&#8221;body&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Section Guide<\/h3>\n<p>[\/et_pb_text][et_pb_blurb title=&#8221;Diagnosis&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; module_class=&#8221;wh-section-title&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjIyNDUifX0=@&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 6px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22%93}&#8221; background__hover_enabled=&#8221;on|hover&#8221; background_color__hover=&#8221;#cde7d6&#8243; background_enable_color__hover=&#8221;on&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; custom_padding__hover=&#8221;|||10px|false|false&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Uncertainty change and loss&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.27.4&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI0NzUifX0=@&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Relationships&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI2NjkifX0=@&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Practical strategies&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; _builder_version=&#8221;4.27.5&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;ec31b593-7ea3-4476-a3e9-378d966a363d&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI3MjYifX0=@&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Coping with pain&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; _builder_version=&#8221;4.27.5&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;ec31b593-7ea3-4476-a3e9-378d966a363d&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjUwOTQifX0=@&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Fatigue, tiredness &#038; exhaustion&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; _builder_version=&#8221;4.27.5&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;ec31b593-7ea3-4476-a3e9-378d966a363d&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjUxOTkifX0=@&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Navigating healthcare&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1em&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;\/wellbeing-hub\/navigating-healthcare&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Sources of support&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;\/wellbeing-hub\/sources-of-support&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Deciding to have children (or not)&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjU4NDUifX0=@&#8221; hover_enabled=&#8221;0&#8243; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221; _dynamic_attributes=&#8221;link_option_url&#8221; sticky_enabled=&#8221;0&#8243;][\/et_pb_blurb][\/et_pb_column][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p><nav aria-label=\"breadcrumbs\" class=\"rank-math-breadcrumb\"><p><span class=\"last\">Home<\/span><\/p><\/nav> Looking for a diagnosis Tips for waiting and going for genetic testingFinding a diagnosis Sometimes the diagnosis of a rare condition may happen unexpectedly or &#8216;out of the blue.&#8217; More usually, it is after a long period of trying to understand different symptoms, feeling unwell for some time, or just being aware &#8216;something is [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":2245,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_monsterinsights_skip_tracking":false,"footnotes":"","_members_access_role":[],"_members_access_error":""},"folder":[35],"class_list":["post-2247","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.rareminds.org\/fr\/wp-json\/wp\/v2\/pages\/2247","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.rareminds.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.rareminds.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/fr\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/fr\/wp-json\/wp\/v2\/comments?post=2247"}],"version-history":[{"count":76,"href":"https:\/\/www.rareminds.org\/fr\/wp-json\/wp\/v2\/pages\/2247\/revisions"}],"predecessor-version":[{"id":6070,"href":"https:\/\/www.rareminds.org\/fr\/wp-json\/wp\/v2\/pages\/2247\/revisions\/6070"}],"up":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/fr\/wp-json\/wp\/v2\/pages\/2245"}],"wp:attachment":[{"href":"https:\/\/www.rareminds.org\/fr\/wp-json\/wp\/v2\/media?parent=2247"}],"wp:term":[{"taxonomy":"folder","embeddable":true,"href":"https:\/\/www.rareminds.org\/fr\/wp-json\/wp\/v2\/folder?post=2247"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}