{"id":1817,"date":"2026-05-29T21:34:04","date_gmt":"2026-05-29T21:34:04","guid":{"rendered":"https:\/\/elternundfamily.de\/?p=1817"},"modified":"2026-05-29T21:34:06","modified_gmt":"2026-05-29T21:34:06","slug":"living-with-a-rare-disease-our-son-is-never-the-problem-its-always-the-system","status":"publish","type":"post","link":"https:\/\/elternundfamily.de\/en\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/","title":{"rendered":"Living with a rare disease: \u201eOur son is never the problem, it's always the system\u201c"},"content":{"rendered":"<p class=\"wp-block-paragraph\">When families receive the diagnosis of a serious, often unknown illness, the world initially stands still. However, in practice, it is often not the illness itself that is the greatest daily burden. Many affected parents summarize their exhausting everyday life with one concise sentence: <strong>Living with a rare disease: \u201eOur son is never the problem, it's always the system\u201c<\/strong>. The endless mills of bureaucracy drain energy that should actually benefit the child. How can families overcome these hurdles?<\/p>\n\n\n\n<figure class=\"wp-block-image\"><img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"1024\" src=\"https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2.png\" alt=\"Mother and her chronically ill child laugh together in the living room.\" class=\"wp-image-1818\" srcset=\"https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2.png 1024w, https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2-300x300.png 300w, https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2-150x150.png 150w, https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2-768x768.png 768w, https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2-12x12.png 12w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<h2 id=\"h-der-medizinische-weg-diagnose-und-therapie\" class=\"wp-block-heading\">The Medical Path: Diagnosis and Therapy<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The <strong>Challenges in Diagnosing Rare Diseases<\/strong> are enormous. Often years of uncertainty pass until it is clear what the child is actually suffering from \u2013 as is the case with specific gene defects or when <strong>Rare diseases<\/strong> exist.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The first important step is to have a specialized <strong>Find a Center for Rare Diseases<\/strong> to be able to. Experts bundle their knowledge there. While there isn't one blanket <strong>best clinic for rare diseases<\/strong>, but university networks usually offer the best conditions. They explore innovative <strong>Therapeutic options for unknown diseases<\/strong> and take care of the <strong>Coordination of interdisciplinary care<\/strong>, so that doctors, therapists, and caregivers can work together seamlessly.<\/p>\n\n\n\n<h2 id=\"h-kampf-dem-papierkram-pflege-und-finanzen\" class=\"wp-block-heading\">Fighting red tape: Caregiving and finances<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">However, the real test usually begins for foster parents at the desk. Who <strong>Navigating administrative hurdles in the healthcare system<\/strong> requires a lot of stamina and expertise.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">To the individual <strong>Reduce overload from bureaucratic effort<\/strong> To be able to do so, you should know your claims precisely. A central building block is the care insurance fund:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Apply for long-term care insurance:<\/strong> When it comes to the <strong>Application for care level for child process<\/strong> going, your most important tool is a detailed care diary. Document every step!<\/li>\n\n\n\n<li><strong>Choosing benefits wisely:<\/strong> Do you know the <strong>Care allowance vs. benefits in kind: Differences<\/strong>While the care allowance is paid directly to you, the services in kind finance professional care services. Often, a combination (combined benefit) brings the best <strong>Financial relief for caring parents<\/strong>.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Don't give up when you face setbacks. It's important to <strong>Rights of informal caregivers towards authorities<\/strong> to represent yourself confidently. Don't shy away from a factual <strong>Formulate an objection to the rejection of aids<\/strong> to allow \u2013 the insurance companies often give in at the second stage.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><img decoding=\"async\" width=\"1024\" height=\"1024\" src=\"https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/c45806e8-c4c9-4b39-a16c-fde6e673adfb.png\" alt=\"Father sorts documents and applications at the desk\" class=\"wp-image-1819\" srcset=\"https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/c45806e8-c4c9-4b39-a16c-fde6e673adfb.png 1024w, https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/c45806e8-c4c9-4b39-a16c-fde6e673adfb-300x300.png 300w, https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/c45806e8-c4c9-4b39-a16c-fde6e673adfb-150x150.png 150w, https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/c45806e8-c4c9-4b39-a16c-fde6e673adfb-768x768.png 768w, https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/c45806e8-c4c9-4b39-a16c-fde6e673adfb-12x12.png 12w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" loading=\"lazy\" \/><\/figure>\n\n\n\n<h3 id=\"h-teilhabe-im-alltag-und-in-der-schule\" class=\"wp-block-heading\">Participation in everyday life and at school<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Also <strong>rare diseases<\/strong> must not be a reason for exclusion. There are legal supports for everyday school life:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Would you like a <strong>Applying for a support worker for inclusion, requirements<\/strong> This is usually confirmed by expert opinions that attest to an existing or imminent mental or physical disability.<\/li>\n\n\n\n<li>In addition, students are entitled to a <strong>Compensation for disadvantages at school due to chronic illness<\/strong> \u2013 for example, through time bonuses for exams or the use of technical aids.<\/li>\n<\/ul>\n\n\n\n<h2 id=\"h-kraft-tanken-sie-sind-nicht-allein\" class=\"wp-block-heading\">Fueling up: You are not alone!<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The concern for one's own child often pushes parents to the limit. Therefore, targeted <strong>psychosocial support for family members<\/strong> essential to stay healthy in the long term. Use therapy services or retreats for caregivers.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Particularly valuable is also the <strong>Networking in self-help groups for rare diseases<\/strong>. Exchange with like-minded people not only provides comfort but often delivers the best insider tips for dealing with authorities. Because at the end of the day, the realization remains: the system is rigid, but with the right knowledge and a strong community, you can move it in the interest of your wonderful child.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Wenn Familien die Diagnose einer schwerwiegenden, oft unbekannten Krankheit erhalten, steht die Welt zun\u00e4chst still. Doch in der Praxis ist [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1818,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[48],"tags":[],"class_list":["post-1817","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-gesundheit-ernaehrung"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.6 (Yoast SEO v27.6) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Leben mit seltener Erkrankung: \u201eUnser Sohn ist nie das Problem, es ist immer das System\u201c - ElternundFamiliy.de<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/elternundfamily.de\/en\/living-with-a-rare-disease-our-son-is-never-the-problem-its-always-the-system\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Leben mit seltener Erkrankung: \u201eUnser Sohn ist nie das Problem, es ist immer das System\u201c\" \/>\n<meta property=\"og:description\" content=\"Wenn Familien die Diagnose einer schwerwiegenden, oft unbekannten Krankheit erhalten, steht die Welt zun\u00e4chst still. Doch in der Praxis ist [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/elternundfamily.de\/en\/living-with-a-rare-disease-our-son-is-never-the-problem-its-always-the-system\/\" \/>\n<meta property=\"og:site_name\" content=\"ElternundFamiliy.de\" \/>\n<meta property=\"article:published_time\" content=\"2026-05-29T21:34:04+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-05-29T21:34:06+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1024\" \/>\n\t<meta property=\"og:image:height\" content=\"1024\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"ElternundFamily\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"ElternundFamily\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/\"},\"author\":{\"name\":\"ElternundFamily\",\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/#\\\/schema\\\/person\\\/2682bc9c49652a964d2a002e96404bc3\"},\"headline\":\"Leben mit seltener Erkrankung: \u201eUnser Sohn ist nie das Problem, es ist immer das System\u201c\",\"datePublished\":\"2026-05-29T21:34:04+00:00\",\"dateModified\":\"2026-05-29T21:34:06+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/\"},\"wordCount\":553,\"publisher\":{\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/#\\\/schema\\\/person\\\/2682bc9c49652a964d2a002e96404bc3\"},\"image\":{\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/elternundfamily.de\\\/wp-content\\\/uploads\\\/2026\\\/05\\\/875377c0-ed37-407f-80b7-610e00c96ee2.png\",\"articleSection\":[\"Gesundheit &amp; Ern\u00e4hrung\"],\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/\",\"url\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/\",\"name\":\"Leben mit seltener Erkrankung: \u201eUnser Sohn ist nie das Problem, es ist immer das System\u201c - ElternundFamiliy.de\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/elternundfamily.de\\\/wp-content\\\/uploads\\\/2026\\\/05\\\/875377c0-ed37-407f-80b7-610e00c96ee2.png\",\"datePublished\":\"2026-05-29T21:34:04+00:00\",\"dateModified\":\"2026-05-29T21:34:06+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/#primaryimage\",\"url\":\"https:\\\/\\\/elternundfamily.de\\\/wp-content\\\/uploads\\\/2026\\\/05\\\/875377c0-ed37-407f-80b7-610e00c96ee2.png\",\"contentUrl\":\"https:\\\/\\\/elternundfamily.de\\\/wp-content\\\/uploads\\\/2026\\\/05\\\/875377c0-ed37-407f-80b7-610e00c96ee2.png\",\"width\":1024,\"height\":1024},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Start\",\"item\":\"https:\\\/\\\/elternundfamily.de\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Leben mit seltener Erkrankung: \u201eUnser Sohn ist nie das Problem, es ist immer das System\u201c\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/#website\",\"url\":\"https:\\\/\\\/elternundfamily.de\\\/\",\"name\":\"ElternUndFamilie.de\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/#\\\/schema\\\/person\\\/2682bc9c49652a964d2a002e96404bc3\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/elternundfamily.de\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"},{\"@type\":[\"Person\",\"Organization\"],\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/#\\\/schema\\\/person\\\/2682bc9c49652a964d2a002e96404bc3\",\"name\":\"ElternundFamily\",\"logo\":{\"@id\":\"https:\\\/\\\/elternundfamily.de\\\/#\\\/schema\\\/person\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/elternundfamily.de\"],\"url\":\"https:\\\/\\\/elternundfamily.de\\\/en\\\/author\\\/ninahenning\\\/\"}]}<\/script>\n<!-- \/ Yoast SEO Premium plugin. -->","yoast_head_json":{"title":"Living with a Rare Disease: \u201eOur Son is Never the Problem, It's Always the System\u201c - ElternundFamily.de","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/elternundfamily.de\/en\/living-with-a-rare-disease-our-son-is-never-the-problem-its-always-the-system\/","og_locale":"en_US","og_type":"article","og_title":"Leben mit seltener Erkrankung: \u201eUnser Sohn ist nie das Problem, es ist immer das System\u201c","og_description":"Wenn Familien die Diagnose einer schwerwiegenden, oft unbekannten Krankheit erhalten, steht die Welt zun\u00e4chst still. Doch in der Praxis ist [&hellip;]","og_url":"https:\/\/elternundfamily.de\/en\/living-with-a-rare-disease-our-son-is-never-the-problem-its-always-the-system\/","og_site_name":"ElternundFamiliy.de","article_published_time":"2026-05-29T21:34:04+00:00","article_modified_time":"2026-05-29T21:34:06+00:00","og_image":[{"width":1024,"height":1024,"url":"https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2.png","type":"image\/png"}],"author":"ElternundFamily","twitter_card":"summary_large_image","twitter_misc":{"Written by":"ElternundFamily","Est. reading time":"4 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/#article","isPartOf":{"@id":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/"},"author":{"name":"ElternundFamily","@id":"https:\/\/elternundfamily.de\/#\/schema\/person\/2682bc9c49652a964d2a002e96404bc3"},"headline":"Leben mit seltener Erkrankung: \u201eUnser Sohn ist nie das Problem, es ist immer das System\u201c","datePublished":"2026-05-29T21:34:04+00:00","dateModified":"2026-05-29T21:34:06+00:00","mainEntityOfPage":{"@id":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/"},"wordCount":553,"publisher":{"@id":"https:\/\/elternundfamily.de\/#\/schema\/person\/2682bc9c49652a964d2a002e96404bc3"},"image":{"@id":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/#primaryimage"},"thumbnailUrl":"https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2.png","articleSection":["Gesundheit &amp; Ern\u00e4hrung"],"inLanguage":"en-US"},{"@type":"WebPage","@id":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/","url":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/","name":"Living with a Rare Disease: \u201eOur Son is Never the Problem, It's Always the System\u201c - ElternundFamily.de","isPartOf":{"@id":"https:\/\/elternundfamily.de\/#website"},"primaryImageOfPage":{"@id":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/#primaryimage"},"image":{"@id":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/#primaryimage"},"thumbnailUrl":"https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2.png","datePublished":"2026-05-29T21:34:04+00:00","dateModified":"2026-05-29T21:34:06+00:00","breadcrumb":{"@id":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/"]}]},{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/#primaryimage","url":"https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2.png","contentUrl":"https:\/\/elternundfamily.de\/wp-content\/uploads\/2026\/05\/875377c0-ed37-407f-80b7-610e00c96ee2.png","width":1024,"height":1024},{"@type":"BreadcrumbList","@id":"https:\/\/elternundfamily.de\/leben-mit-seltener-erkrankung-unser-sohn-ist-nie-das-problem-es-ist-immer-das-system\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Start","item":"https:\/\/elternundfamily.de\/"},{"@type":"ListItem","position":2,"name":"Leben mit seltener Erkrankung: \u201eUnser Sohn ist nie das Problem, es ist immer das System\u201c"}]},{"@type":"WebSite","@id":"https:\/\/elternundfamily.de\/#website","url":"https:\/\/elternundfamily.de\/","name":"ParentsAndFamily.de","description":"","publisher":{"@id":"https:\/\/elternundfamily.de\/#\/schema\/person\/2682bc9c49652a964d2a002e96404bc3"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/elternundfamily.de\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"},{"@type":["Person","Organization"],"@id":"https:\/\/elternundfamily.de\/#\/schema\/person\/2682bc9c49652a964d2a002e96404bc3","name":"Parents and Family","logo":{"@id":"https:\/\/elternundfamily.de\/#\/schema\/person\/image\/"},"sameAs":["https:\/\/elternundfamily.de"],"url":"https:\/\/elternundfamily.de\/en\/author\/ninahenning\/"}]}},"_links":{"self":[{"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/posts\/1817","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/comments?post=1817"}],"version-history":[{"count":1,"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/posts\/1817\/revisions"}],"predecessor-version":[{"id":1820,"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/posts\/1817\/revisions\/1820"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/media\/1818"}],"wp:attachment":[{"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/media?parent=1817"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/categories?post=1817"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/elternundfamily.de\/en\/wp-json\/wp\/v2\/tags?post=1817"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}