{"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\/nl\/2011\/02\/28\/prf-celebrates-world-rare-disease-day\/","title":{"rendered":"PRF viert Wereld Zeldzame Ziekten Dag"},"content":{"rendered":"

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\"\"Zeldzame ziekten treffen wereldwijd meer dan 250 miljoen mensen. Ongeveer 75 procent van de getroffenen zijn kinderen, waardoor deze ziektecategorie een van de dodelijkste en meest slopende is voor kinderen. Net als kinderen met Progeria hebben ze allemaal zeer unieke behoeften, maar velen krijgen weinig of geen ondersteuning vanwege de zeldzaamheid van hun aandoening. Voordat PRF werd opgericht, was dit wat kinderen met Progeria en hun families ervoeren. Nu - 11 jaar later - hebben ze hoop en zien ze echte vooruitgang in behandelingen en genezing. We vieren deze vooruitgang, maar weten dat er nog veel moet gebeuren om voldoende ondersteuning te krijgen voor deze - en andere - zeldzame ziekten.<\/p>\n

De vierde jaarlijkse dag van de zeldzame ziekten<\/strong> vindt plaats op 28 februari 2011, met virtuele en fysieke evenementen bij de National Institutes of Health en andere locaties over de hele wereld. Dit is een moment waarop de gemeenschap van getroffen kinderen en families samenkomt om steun te vergaren voor hun inspanningen.<\/strong> Bezoek alstublieft https:\/\/rarediseaseday.us\/<\/a> om erachter te komen hoe u kunt helpen de boodschap te verspreiden.<\/p>\n

\"\"<\/p>\n

De Progeria Research Foundation werkt samen met The Wereldwijd genenproject (GGP)<\/a>, een toonaangevende non-profitorganisatie die opkomt voor zeldzame ziekten en het publiek informeert over de prevalentie van zeldzame ziekten wereldwijd.<\/p>\n

GGP heeft de Campagne voor denim \u201cWear That You Care\u2122\u201d<\/strong> om aandacht te vragen voor de wereldwijde crisis in de ontwikkeling van medicijnen waarmee miljoenen mensen met zeldzame ziekten worden geconfronteerd. Sluit je aan bij duizenden supporters over de hele wereld door je favoriete spijkerbroek te dragen om bewustzijn te cre\u00ebren voor de zeldzame ziektegemeenschap. Ga nog een stap verder en maak een foto van jezelf of je groep in spijkerbroek en post deze op Facebookpagina van GGP<\/a>. Het maakt niet uit hoe creatief je bent en hoeveel mensen er meedoen, op 28 februari maak je een groot statement.<\/p>\n

"Het stimuleren van de ontwikkeling van nieuwe behandelingen voor duizenden zeldzame ziekten is een van de meest urgente uitdagingen op het gebied van gezondheidszorg waar we vandaag de dag mee te maken hebben," aldus Nicole Boice, oprichter van Global Genes Project. "Het is tijd om samen te werken om onze stem te laten horen en te pushen voor belangrijke wetgevende initiatieven die nieuwe prikkels bieden aan onderzoekers en de industrie, zodat ze de tijd en het kapitaal investeren die nodig zijn om nieuwe behandelingen te ontwikkelen."<\/p>\n

Hartelijk dank, de organisatoren van Rare Disease Day, het Global Genes Project en JULLIE voor het vergroten van de bewustwording rondom zeldzame ziekten en het belang van het ontwikkelen van behandelingen en genezingen hiervoor!<\/strong><\/p>\n

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

[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\/nl\/2011\/02\/28\/prf-celebrates-world-rare-disease-day\/\" \/>\n<meta property=\"og:locale\" content=\"nl_NL\" \/>\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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