{"id":2849,"date":"2024-05-08T21:49:04","date_gmt":"2024-05-08T20:49:04","guid":{"rendered":"https:\/\/www.rareminds.org\/?page_id=2849"},"modified":"2026-08-10T17:03:40","modified_gmt":"2026-08-10T16:03:40","slug":"rare-condition-organisations","status":"publish","type":"page","link":"https:\/\/www.rareminds.org\/es\/wellbeing-hub\/sources-of-support\/rare-condition-organisations\/","title":{"rendered":"Organizaciones de enfermedades raras"},"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; 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title_text=&#8221;Rareminds-Wellbeing-Hub-Website-Mockup-Images-Sources-of-Support&#8221; align_tablet=&#8221;left&#8221; align_phone=&#8221;left&#8221; align_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.24.3&#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; padding_right_1=&#8221;2vw&#8221; 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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; 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; collapsed=&#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-quote wh-text&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; ul_line_height=&#8221;1.7em&#8221; custom_margin_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<blockquote>\n<p>There have been many occasions where I\u2019ve felt isolated and alone when thinking about my rare condition. However, being part of the support group for people with my condition has helped immensely. There\u2019s nothing like the feeling of relief when walking into a room and seeing people who like you!<\/p>\n<\/blockquote>\n<p>[\/et_pb_text][et_pb_text module_class=&#8221;wh-quote wh-text&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; ul_line_height=&#8221;1.7em&#8221; custom_margin_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Connecting with others<\/h2>\n<p>Connecting with others who are going through similar experiences can help you feel understood and validated. It can reduce feelings of isolation, help you find information, learn new ideas and find mutual support.<\/p>\n<p>Support groups might be online, in person, or a combination of both.<\/p>\n<p>You might prefer to just \u2018dip in and out\u2019 or depending on your needs, preferences and circumstances, you might want to get more involved. How involved you chose to be may change over time.\u00a0<\/p>\n<p>If hearing about other people&#8217;s experiences feels \u2018too much\u2019 at any point, remember it&#8217;s also fine to take a step back. You can always re-engage if and when you want to.<\/p>\n<p>[\/et_pb_text][et_pb_text module_class=&#8221;wh-quote wh-text&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; ul_line_height=&#8221;1.7em&#8221; custom_margin_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>How to find support organisations<\/h2>\n<p>There are lots of charities that share information and support for people affected by a rare condition. You can look for the organisation relevant to you through the larger charities listed below.<\/p>\n<p>If you are impacted by an ultra-rare condition or are undiagnosed, you may be able to find others in a similar situation, or with an associated type of condition. The charities listed below should also be able to help with this.<\/p>\n<p>You can also access support through organisations that are focused on certain aspects of living with a rare condition that are shared by other people. This could include being a carer, neurodiversity, parenting a child with SEN, or living with cancer.<\/p>\n<p>&nbsp;<\/p>\n<h5>You can make contact with as many &#8211; and whichever &#8211; organisations you like. It doesn\u2019t have to be just one.<\/h5>\n<p>[\/et_pb_text][et_pb_video src=&#8221;https:\/\/youtu.be\/TwAHRjyRl6Q?si=M88cgI9CPR29vbf_&#8221; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_video][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; header_6_line_height=&#8221;1.2em&#8221; custom_margin=&#8221;-2%||||false|false&#8221; custom_margin_tablet=&#8221;-3%||||false|false&#8221; custom_margin_phone=&#8221;-3%||||false|false&#8221; custom_margin_last_edited=&#8221;on|desktop&#8221; header_6_font_size_tablet=&#8221;&#8221; header_6_font_size_phone=&#8221;12px&#8221; header_6_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h6 style=\"text-align: right;\"><strong>The importance of community when you have a rare condition<\/strong><\/h6>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;7df83dcc-1bd9-47cf-b9ca-3651c251e315&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Useful links<\/h2>\n<p><a href=\"https:\/\/breaking-down-barriers.org.uk\" target=\"_blank\" rel=\"noopener\">Breaking Down Barriers<\/a> is a network of over 60 organisations working together to improve the lives of families from diverse and marginalised communities who are affected by genetic conditions.\u00a0<\/p>\n<p><a href=\"https:\/\/www.carersuk.org\/\" target=\"_blank\" rel=\"noopener\">Carers UK<\/a>\u00a0 provides unpaid carers with expert information, advice and support, and also campaigns to make life better for carers.<\/p>\n<p><a href=\"https:\/\/www.contact.org.uk\" target=\"_blank\" rel=\"noopener\">Contact<\/a> supports families of disabled children to feel valued, informed, supported and informed.<\/p>\n<p><a href=\"https:\/\/genepeople.org.uk\/\" target=\"_blank\" rel=\"noopener\">Gene People<\/a> run a telephone and email helpline service for people with a genetic condition, their relatives and anyone who needs to know more about genetic conditions.<\/p>\n<p><a href=\"https:\/\/geneticalliance.org.uk\" target=\"_blank\" rel=\"noopener\">Genetic Alliance UK<\/a> is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. They run the projects Rare Disease UK and SWAN UK (Syndromes Without A Name).\u00a0<\/p>\n<p><a href=\"https:\/\/metabolicsupportuk.org\/\" target=\"_blank\" rel=\"noopener\">Metabolic Support UK<\/a>\u00a0 are the leading organisation for Inherited Metabolic Disorders (IMDs).<\/p>\n<p><a href=\"https:\/\/rarerevolutionmagazine.com\/\" target=\"_blank\" rel=\"noopener\">Rare Revolution Magazine<\/a> is a digital magazine giving a voice to patients affected by rare conditions.\u00a0<\/p>\n<p><a href=\"https:\/\/www.samebutdifferentcic.org.uk\/rarehub\" target=\"_blank\" rel=\"noopener\">Same But Different<\/a> provides a range of support options through their RAREHub including information and online groups.\u00a0<\/p>\n<p><a href=\"https:\/\/www.neural.org.uk\/\" target=\"_blank\" rel=\"noopener\">The Neurological Alliance<\/a> is 90 organisations all committed to improving treatment, care and support for people affected by neurological conditions.\u00a0<\/p>\n<p><a href=\"https:\/\/rarechromo.org\u00a0\" target=\"_blank\" rel=\"noopener\">Unique<\/a> aims to support and inform anyone affected by a rare chromosome disorder or an autosomal dominant single gene disorder.\u00a0<\/p>\n<p>[\/et_pb_text][et_pb_code _builder_version=&#8221;4.24.3&#8243; 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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;Rare condition organisations&#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@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI4NDkifX0=@&#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; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22%93}&#8221; background__hover_enabled=&#8221;on|hover&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; border_radii__hover_enabled=&#8221;off|hover&#8221; border_width_all__hover_enabled=&#8221;off|desktop&#8221; border_width_all__hover=&#8221;1px&#8221;]<\/p>\n<p>Connecting with others, how to find the right support for you<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;General mental health support&#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@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI4NjIifX0=@&#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; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22%93}&#8221; background__hover_enabled=&#8221;on|hover&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; border_radii__hover_enabled=&#8221;off|hover&#8221; border_width_all__hover_enabled=&#8221;off|desktop&#8221; border_width_all__hover=&#8221;1px&#8221;]<\/p>\n<p>Types of therapy &amp; counselling, how to access, support for young people<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;Practical support&#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@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI4NTUifX0=@&#8221; sticky_limit_bottom=&#8221;body&#8221; custom_css_blurb_title=&#8221;padding-bottom: 5px;&#8221; 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However, being part of the support group for people with my condition has helped immensely. There\u2019s nothing like the feeling of relief when [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":2846,"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":""},"folder":[35],"class_list":["post-2849","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/pages\/2849","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/comments?post=2849"}],"version-history":[{"count":10,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/pages\/2849\/revisions"}],"predecessor-version":[{"id":6113,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/pages\/2849\/revisions\/6113"}],"up":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/pages\/2846"}],"wp:attachment":[{"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/media?parent=2849"}],"wp:term":[{"taxonomy":"folder","embeddable":true,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/folder?post=2849"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}