{"id":2044,"date":"2011-02-28T12:24:13","date_gmt":"2011-02-28T12:24:13","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?p=2044"},"modified":"2020-12-10T17:43:09","modified_gmt":"2020-12-10T22:43:09","slug":"prf-celebrates-world-rare-disease-day","status":"publish","type":"post","link":"https:\/\/www.progeriaresearch.org\/de\/2011\/02\/28\/prf-celebrates-world-rare-disease-day\/","title":{"rendered":"PRF feiert den Welttag der seltenen Erkrankungen"},"content":{"rendered":"

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\"\"Weltweit sind \u00fcber 250 Millionen Menschen von seltenen Krankheiten betroffen. Etwa 75 Prozent der Betroffenen sind Kinder, was diese Krankheitskategorie zu einer der t\u00f6dlichsten und schw\u00e4chendsten f\u00fcr Kinder macht. Wie Kinder mit Progerie haben sie alle sehr individuelle Bed\u00fcrfnisse, aber viele erhalten aufgrund der Seltenheit ihrer Erkrankung wenig oder keine Unterst\u00fctzung. Vor der Gr\u00fcndung von PRF war dies die Erfahrung von Kindern mit Progerie und ihren Familien. Jetzt \u2013 11 Jahre sp\u00e4ter \u2013 haben sie Hoffnung und sehen echte Fortschritte bei Behandlung und Heilung. Wir feiern diesen Fortschritt, wissen aber, dass noch viel zu tun ist, um ausreichende Unterst\u00fctzung f\u00fcr diese \u2013 und andere \u2013 seltene Krankheiten zu erhalten.<\/p>\n

Der vierte j\u00e4hrliche Tag der seltenen Erkrankungen<\/strong> findet am 28. Februar 2011 statt, wobei virtuelle und pers\u00f6nliche Veranstaltungen an den National Institutes of Health und anderen Orten auf der ganzen Welt abgehalten werden. Dies ist eine Zeit, in der die Gemeinschaft der betroffenen Kinder und Familien zusammenkommt, um Unterst\u00fctzung f\u00fcr ihre Bem\u00fchungen zu gewinnen.<\/strong> Besuchen Sie https:\/\/rarediseaseday.us\/<\/a> um herauszufinden, wie Sie helfen k\u00f6nnen, die Nachricht zu verbreiten.<\/p>\n

\"\"<\/p>\n

Die Progeria Research Foundation arbeitet zusammen mit The Globales Gene-Projekt (GGP)<\/a>, eine f\u00fchrende gemeinn\u00fctzige Interessenvertretung f\u00fcr seltene Krankheiten, die die \u00d6ffentlichkeit \u00fcber die weltweite Verbreitung seltener Krankheiten aufkl\u00e4rt.<\/p>\n

GGP hat den \u201eWear That You Care\u2122\u201c Denim-Kampagne<\/strong> um auf die globale Arzneimittelkrise aufmerksam zu machen, mit der Millionen von Menschen mit seltenen Krankheiten konfrontiert sind. Schlie\u00dfen Sie sich Tausenden von Unterst\u00fctzern auf der ganzen Welt an, indem Sie Ihre Lieblingsjeans tragen, um das Bewusstsein f\u00fcr die Gemeinschaft der seltenen Krankheiten zu sch\u00e4rfen. Gehen Sie noch einen Schritt weiter und machen Sie ein Foto von sich selbst oder Ihrer Gruppe in Jeans und posten Sie es auf Facebook-Seite von GGP<\/a>. Egal, wie kreativ Sie sind oder wie viele Leute teilnehmen, am 28. Februar werden Sie ein gro\u00dfes Statement abgeben.<\/p>\n

\u201eDie Entwicklung neuer Behandlungsmethoden f\u00fcr Tausende seltener Krankheiten voranzutreiben, ist eine der dringendsten Herausforderungen im Gesundheitswesen, vor denen wir heute weltweit stehen\u201c, sagte Nicole Boice, Gr\u00fcnderin des Global Genes Project. \u201eEs ist an der Zeit, dass wir uns zusammentun, um unsere Stimme zu erheben und wichtige Gesetzesinitiativen voranzutreiben, die Forschern und der Industrie neue Anreize bieten, damit sie die n\u00f6tige Zeit und das n\u00f6tige Kapital investieren, um neue Behandlungsmethoden zu entwickeln.\u201c<\/p>\n

Vielen Dank an die Organisatoren des Tages der Seltenen Erkrankungen, das Global Genes Project und an SIE, dass Sie das Bewusstsein f\u00fcr seltene Erkrankungen sch\u00e4rfen und zeigen, wie wichtig es ist, Behandlungs- und Heilmethoden f\u00fcr diese Erkrankungen zu entwickeln!<\/strong><\/p>\n

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[et_pb_section fb_built=”1″ _builder_version=”3.22″][et_pb_row _builder_version=”3.25″ background_size=”initial” background_position=”top_left” background_repeat=”repeat”][et_pb_column type=”4_4″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.6.5″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” hover_enabled=”0″ sticky_enabled=”0″] Rare disease affects over 250 million people worldwide. Approximately 75 percent of those affected are children, making this disease category one of the most deadly and debilitating for children. Like children with Progeria, they all have very unique […]<\/p>","protected":false},"author":1,"featured_media":2045,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"

[vc_custom_heading text=\"PRF Celebrates World Rare Disease Day\" font_container=\"tag:h1|text_align:left\" use_theme_fonts=\"yes\"]\"\"Rare disease affects over 250 million people worldwide. Approximately 75 percent of those affected are children, making this disease category one of the most deadly and debilitating for children. Like children with Progeria, they all have very unique needs, but many have little or no support due to the rarity of their condition. Before PRF was formed, this was what children with Progeria and their families experienced. Now \u2013 11 years later - they have hope and see true progress towards treatments and cure. We celebrate this progress, but know there is still much to do to gain sufficient support for this \u2013 and other \u2013 rare diseases.<\/p>

The Fourth Annual Rare Disease Day<\/strong> will take place on February 28, 2011, with virtual and in-person events being held at the National institutes of Health and other places around the world. This is a time when the community of affected children and families come together to garner support for their efforts.<\/strong> Please visit https:\/\/rarediseaseday.us\/<\/a> to find out how you can help spread the word.<\/p>

\"\"<\/p>

The Progeria Research Foundation is partnering with The Global Genes Project (GGP)<\/a>, a leading nonprofit rare disease advocacy organization that educates the public about the prevalence of rare diseases worldwide.<\/p>

GGP has launched the \"Wear That You Care\u2122\" Denim Campaign<\/strong> to call attention to the global drug development crisis facing millions of people with rare diseases. Join thousands of supporters all over the world by wearing your favorite pair of jeans to raise awareness for the rare disease community. Go one step further and take a picture of yourself or your group in jeans and post it to GGP's Facebook page<\/a>. No matter how creative or how many people, you'll be making a big statement on February 28th.<\/p>

\"Spurring development of new treatments for thousands of rare diseases is one of the most pressing health care challenges we face in the world today,\" said Nicole Boice, Founder, Global Genes Project. \"It's time to band together to make our voices heard and to push for major legislative initiatives that provide novel incentives to researchers and industry so they will invest the time and capital needed to develop new treatments.\"<\/p>

Thank you, Rare Disease Day organizers, Global Genes Project and YOU for raising awareness of rare diseases, and the importance of developing treatments and cures for them!<\/strong><\/p>","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[2],"tags":[],"class_list":["post-2044","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"yoast_head":"\nPRF Celebrates World Rare Disease Day - The Progeria Research Foundation<\/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:\/\/www.progeriaresearch.org\/de\/2011\/02\/28\/prf-celebrates-world-rare-disease-day\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"PRF Celebrates World Rare Disease Day - The Progeria Research Foundation\" \/>\n<meta property=\"og:description\" content=\"[et_pb_section fb_built=”1″ _builder_version=”3.22″][et_pb_row _builder_version=”3.25″ background_size=”initial” background_position=”top_left” background_repeat=”repeat”][et_pb_column type=”4_4″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.6.5″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” hover_enabled=”0″ sticky_enabled=”0″] Rare disease affects over 250 million people worldwide. 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