{"id":3660,"date":"2024-01-22T13:24:40","date_gmt":"2025-11-20T10:24:03","guid":{"rendered":"https:\/\/uatm.kyowakirininternational.com\/dach-de\/news-2\/"},"modified":"2025-12-22T14:30:33","modified_gmt":"2025-12-22T14:30:33","slug":"einsatz-fuer-seltene-erkrankungen","status":"publish","type":"page","link":"https:\/\/kyowakirininternational.com\/dach-de\/news\/einsatz-fuer-seltene-erkrankungen\/","title":{"rendered":"Einsatz fuer seltene Erkrankungen"},"content":{"rendered":"

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Healthcare Professionals Hub<\/span><\/a><\/p>\n

” content_phone=”<\/p>\n

Healthcare Professionals Hub<\/span><\/a><\/p>\n

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Bereich f\u00fcr Medizinische Fachkr\u00e4fte<\/span><\/a><\/p>\n

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Unerw\u00fcnschtes Ereignis melden \"\"<\/p>\n

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Unser Einsatz f\u00fcr seltene Erkrankungen<\/h1>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

Was sind \u201edie Seltenen\u201c? Wissen schafft Verst\u00e4ndnis.<\/h2>\n

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Weltweit leben 300 bis 400 Millionen Menschen<\/strong> mit einer seltenen Erkrankung (Rare Disease).1,2<\/sup> \u201eSelten\u201c hei\u00dft, dass jeweils weniger als 5 von 10.000 Menschen<\/strong> davon betroffen sind. In Deutschland gibt es rund 4 Millionen Menschen<\/strong> mit einer solchen Diagnose. Insgesamt wei\u00df man von \u00fcber 7.000 verschiedenen seltenen<\/strong> Krankheitsbildern<\/strong>. Etwa 70 Prozent davon manifestieren sich bereits im Kindesalter.3<\/sup><\/p>\n

Die Herausforderung<\/strong>: Viele dieser seltenen Erkrankungen sind kaum bekannt, selbst unter Fach\u00e4rzten. Deshalb vergehen oft viele Jahre, bis eine korrekte Diagnose gestellt wird. Die Unsicherheit belastet Betroffene und ihre Familien stark \u2013 gesundheitlich, emotional und sozial.<\/p>\n

[\/et_pb_text][et_pb_image src=”https:\/\/kyowakirininternational.com\/dach-de\/wp-content\/uploads\/sites\/17\/2025\/12\/Kyowa-Kirin-Bande-1120-x-90.gif” title_text=”Kyowa Kirin Bande 1120 x 90″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

\u00a0Warum ein Zebra?<\/h2>\n

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Das Zebra ist zum internationalen Symbol f\u00fcr Rare Diseases geworden.<\/p>\n

\u201eWenn du Hufgetrappel h\u00f6rst, denk an Pferde \u2013 nicht an Zebras.\u201c<\/strong> – Dieser \u00fcber 70 Jahre alte Lehrsatz aus der Medizin soll \u00c4rztinnen und \u00c4rzte daran erinnern, zun\u00e4chst die h\u00e4ufigsten Diagnosen in Betracht zu ziehen. F\u00fcr \u201edie Seltenen\u201c bedeutet das jedoch: Sie bleiben oft lange unerkannt.<\/p>\n

Wir wollen diesen Blickwinkel \u00e4ndern. Seltene Erkrankungen brauchen mehr Aufmerksamkeit \u2013 f\u00fcr Forschung, neue Diagnose- und Therapieoptionen und eine bessere Versorgung. Nicht zuletzt aber f\u00fcr ein gr\u00f6\u00dferes Bewusstsein daf\u00fcr in Gesellschaft, Medizin und Politik. Angesichts von 300 bis 400 Millionen Betroffenen weltweit ist das dringend erforderlich. <\/p>\n

Zeit also, den Lehrsatz zu \u00fcberdenken und auch die Zebras in den Fokus zu r\u00fccken!<\/p>\n

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Tag der Seltenen Erkrankungen – Rare Disease Day<\/h2>\n

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Jedes Jahr findet am letzten Tag im Februar der Rare Disease Day<\/strong> statt. Dieser internationale Aktionstag von und f\u00fcr Menschen mit seltenen Erkrankungen wurde 2008 von EURORDIS \u2013 Rare Diseases Europe initiiert. EURORDIS ist eine europ\u00e4ische Allianz von Patientenorganisationen, die ihren Fokus auf \u201edie Seltenen\u201c richten.4<\/sup><\/p>\n

Kyowa Kirin engagiert sich<\/strong> an diesem Tag gemeinsam mit Betroffenen, Angeh\u00f6rigen und Partnern weltweit, um das Thema in den Vordergrund zu r\u00fccken. Mit Aktionen, Erfahrungsberichten und Informationsmaterial setzen wir ein Zeichen f\u00fcr Verst\u00e4ndnis, Solidarit\u00e4t und Hoffnung \u2013 denn jede Geschichte z\u00e4hlt.<\/p>\n

[\/et_pb_text][et_pb_image src=”https:\/\/kyowakirininternational.com\/dach-de\/wp-content\/uploads\/sites\/17\/2025\/11\/Keyvisual_RDD_2026-1024×445.jpg” alt=”Rare Disease Day 2026 Logo in Zebra Optik” title_text=”Logo des Rare Disease Days 2026″ align=”center” _builder_version=”4.27.4″ _module_preset=”default” width=”60%” max_width=”100%” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

Was sind CTCL & XLH? Zwei seltene Erkrankungen kurz erkl\u00e4rt<\/h2>\n

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CTCL (kutanes T-Zell-Lymphom)<\/strong> ist eine seltene Form des Lymphdr\u00fcsenkrebses<\/strong>, die sich vor allem in der Haut zeigt. Typische Symptome sind R\u00f6tungen, Juckreiz oder schuppige Hautstellen, die leicht mit chronischen Hauterkrankungen wie Ekzemen verwechselt werden. Da CTCL langsam fortschreitet, wird es oft erst sp\u00e4t erkannt. Dabei kann eine fr\u00fchzeitige Diagnose viel bewirken! Denn sie erm\u00f6glicht gezielte Therapien und verbessert so die Lebensqualit\u00e4t der Betroffenen.<\/p>\n

XLH (X-chromosomale Hypophosphat\u00e4mie)<\/strong> ist eine erblich bedingte Stoffwechselerkrankung<\/strong>, bei der der K\u00f6rper zu viel Phosphat \u00fcber die Nieren verliert. Das f\u00fchrt zu Verformungen der Knochen<\/strong>, Schmerzen und Wachstumsst\u00f6rungen \u2013 h\u00e4ufig schon im Kindesalter. Dank moderner Forschung stehen heute neue Behandlungsm\u00f6glichkeiten zur Verf\u00fcgung, die die Symptome lindern und die Lebensqualit\u00e4t deutlich verbessern k\u00f6nnen.<\/p>\n

Mehr Informationen finden Sie auf unseren HUB-Seiten<\/strong>, der Webseite f\u00fcr Fachkreisangeh\u00f6rige<\/strong> und auf XLH-Link<\/strong>, unserem Portal mit Informationen und Tipps f\u00fcr Betroffene, Angeh\u00f6rige<\/strong> und Interessierte.<\/p>\n

 <\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_3,1_3,1_3″ _builder_version=”4.27.4″ _module_preset=”default” module_alignment=”center” global_colors_info=”{}”][et_pb_column type=”1_3″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.kyowakirinhub.com\/de-de\/therapiebereiche\/onkologie\/ctcl” url_new_window=”on” button_text=”CTCL Hub” button_alignment=”center” _builder_version=”4.27.4″ _module_preset=”default” custom_button=”on” button_text_color=”#ffffff” button_bg_color=”#ea5504″ global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.kyowakirinhub.com\/de-de\/therapiebereiche\/phosphat-dysregulation\/x-chromosomale-hypophosphatamie” url_new_window=”on” button_text=”XLH Hub” button_alignment=”center” _builder_version=”4.27.4″ _module_preset=”default” custom_button=”on” button_text_color=”#ffffff” button_bg_color=”#ea5504″ global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.xlhlink.de\/” url_new_window=”on” button_text=”XLH Link” button_alignment=”center” _builder_version=”4.27.4″ _module_preset=”default” custom_button=”on” button_text_color=”#ffffff” button_bg_color=”#ea5504″ global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ next_background_color=”#ffffff” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#e8e8e8″ bottom_divider_style=”slant2″ bottom_divider_height=”59px” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

EURORDIS-Kampagne \u2013 \u201cGemeinsam f\u00fcr Seltene Erkrankungen\u201d<\/h2>\n

Der Rare Disease Day<\/strong> wird mittlerweile weltweit in \u00fcber 100 L\u00e4ndern begangen. Das Ziel: die Lebensrealit\u00e4t von Menschen mit einer seltenen Erkrankung sichtbar zu machen und f\u00fcr einen gerechten Zugang zu Diagnose, Behandlung und sozialer Teilhabe<\/strong> zu k\u00e4mpfen.<\/p>\n

Die Kampagne 2026 steht, wie bereits 2025, unter dem Motto \u201eMore Than You Can Imagine\u201c<\/strong> und macht auf die h\u00e4ufig verborgenen Herausforderungen aufmerksam, mit denen die Betroffenen leben. Neben politischen Forderungen f\u00fcr bessere Versorgung setzt EURORDIS auf starke Aktionen wie #LightUpForRare:<\/strong> Weltweit teilen Menschen Fotos von Lichtern in den Kampagnenfarben Pink, Blau, Gr\u00fcn und Lila, um Hoffnung und Solidarit\u00e4t zu zeigen.<\/p>\n

Mehr Infos und Materialien gibt es auf der offiziellen Seite: rarediseaseday.org<\/a><\/p>\n

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Quellen<\/span>:<\/strong><\/h3>\n

1<\/sup> Global Genes. (n.d.). RARE Disease Facts. [Online] Verf\u00fcgbar unter: https:\/\/globalgenes.org\/rare-disease-facts\/<\/a>, letzter Zugriff: Dezember 2025<\/p>\n

2<\/sup>The European Organisation for Rare Diseases (n.d.). [Online] Verf\u00fcgbar unter: https:\/\/www.rarediseaseday.org\/<\/a>, letzter Zugriff: Dezember 2025<\/p>\n

3<\/sup> Prof. Dr. Helge Hebestreit (n.d.). [Online] Verf\u00fcgbar unter: https:\/\/www.seltenekrankheiten.de\/anlaufstellen\/erwachsenwerden-mit-seltener-erkrankung<\/a>, letzter Zugriff: Dezember 2025<\/p>\n

4<\/sup>EURORDIS. (n.d.). Our History. [Online] Verf\u00fcgbar unter: https:\/\/www.eurordis.org\/who-we-are\/our-history\/<\/a>, letzter Zugriff: Dezember 2025<\/p>\n

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Unerw\u00fcnschte Ereignisse bitte hier melden<\/a><\/span><\/p>\n

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Klinische Studien von Kyowa Kirin finden Sie hier<\/a><\/span><\/p>\n

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Presse und Medien<\/a><\/span>
Karriere<\/a><\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_6″ _builder_version=”4.24.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” text_text_color=”#FFFFFF” text_font_size=”16px” text_text_color_tablet=”” text_text_color_phone=”” text_text_color_last_edited=”on|desktop” global_colors_info=”{}” text_text_color__hover_enabled=”on|desktop” text_text_color__hover=”#FFFFFF”]Meldungen<\/a><\/span>
\nVerantwortung<\/a><\/span>[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_6″ _builder_version=”4.24.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.24.0″ _module_preset=”default” width=”70%” max_width=”100%” custom_padding=”||27px|||” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.24.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” text_text_color=”#FFFFFF” header_text_color=”#FFFFFF” header_4_text_color=”#FFFFFF” header_6_text_color=”#FFFFFF” width=”100%” max_width=”100%” global_colors_info=”{}”]<\/p>\n

\u00dcBER UNS <\/a>\u00a0 |\u00a0 KONTAKT<\/a>\u00a0 |\u00a0 Rechtliches<\/a><\/h4>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.24.0″ _module_preset=”default” width=”70%” max_width=”100%” custom_margin=”-50px||||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.24.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” text_text_color=”#FFFFFF” width=”100%” max_width=”100%” global_colors_info=”{}”]<\/p>\n

Kyowa Kirin GmbH
<\/strong>Monschauer Str. 1
<\/strong>D-40549 D\u00fcsseldorf
<\/strong>Deutschland
<\/strong>T<\/strong>\u00a0+49 (0) 211\/416 119-0
F<\/strong>\u00a0+49 (0) 211\/416 119-20<\/span><\/p>\n

Copyright \u00a9 Kyowa Kirin International plc. Alle Rechte vorbehalten.\u00a0Diese Webseite wird von Kyowa Kirin International plc entwickelt und finanziert.<\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.4″ _module_preset=”default” background_color=”#5d6164″ global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” width=”100%” max_width=”70%” custom_margin=”-100px||||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_text_color=”#FFFFFF” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n

KKI\/DE\/KKI\/0627 December 2025<\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

This page is not intended for the general public. News releases issued by Kyowa Kirin are intended to inform media and investors of information related to the company\u2019s business in a fair manner. Though it may include information concerning pharmaceutical products (including products under development), it is not for the purpose of promoting, advertising or medical advice.<\/p>\n","protected":false},"author":1,"featured_media":3676,"parent":923,"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-3660","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"\nUnser Einsatz f\u00fcr seltene Erkrankungen \u2013 Gemeinsam f\u00fcr mehr Aufmerksamkeit<\/title>\n<meta name=\"description\" content=\"Wir engagieren uns mit vielf\u00e4ltigen Aktionen f\u00fcr Menschen mit seltenen Erkrankungen. 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