{"id":59,"date":"2023-11-06T10:46:44","date_gmt":"2023-11-06T10:46:44","guid":{"rendered":"https:\/\/liveunlimitedpku-dev-001.azurewebsites.net\/hu-hu\/?page_id=59"},"modified":"2024-12-07T20:48:10","modified_gmt":"2024-12-07T20:48:10","slug":"beteg-tamogatas","status":"publish","type":"page","link":"https:\/\/pku.biomarin.com\/hu-hu\/liveunlimited\/beteg-tamogatas\/","title":{"rendered":"Beteg t\u00e1mogat\u00e1s"},"content":{"rendered":"
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\n\t\t\t \t\t\t\t Az \u00e9let bonyolult, ha nincsenek meg a sz\u00fcks\u00e9ges eszk\u00f6z\u00f6k<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t

BETEG T\u00c1MOGAT\u00c1S\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t

A kamp\u00e1nyt a BioMarin finansz\u00edrozta \u00e9s fejlesztette ki az al\u00e1bbi szervezetekkel egy\u00fcttm\u0171k\u00f6d\u00e9sben: AMMeC and Cometa A.S.M.M.E (P\u00e1dua) (Olaszorsz\u00e1g), Les Feux Follets (Franciaorsz\u00e1g), Svenska PKU-f\u00f6reningen (Sv\u00e9dorsz\u00e1g), PKU Aile Derne\u011fi (T\u00f6r\u00f6korsz\u00e1g), \u00e9s FEEMH (Spanyolorsz\u00e1g), PKUAI (\u00cdrorsz\u00e1g), APOFEN (Portug\u00e1lia) \u00e9s PKU Egyes\u00fclet (Magyarorsz\u00e1g).<\/p>\n

Tudjon meg t\u00f6bbet a beteg-szervezetekr\u0151l, amelyek ezen kamp\u00e1ny l\u00e9trehoz\u00e1s\u00e1ban \u00e9s n\u00e9pszer\u0171s\u00edt\u00e9s\u00e9ben is egy\u00fcttm\u0171k\u00f6dtek, az \u00e1ltaluk aj\u00e1nlott t\u00e1mogat\u00e1sr\u00f3l, a munk\u00e1jukr\u00f3l az al\u00e1bbi el\u00e9rhet\u0151s\u00e9gen.<\/p>\n\t\t\t\t\t\t\t\t\n

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Magyarorsz\u00e1gi PKU Egyes\u00fclet\n<\/h3>\n

Magyarorsz\u00e1g<\/strong><\/p>\n

Az 1990-ben alap\u00edtott Magyarorsz\u00e1gi PKU Egyes\u00fclet orsz\u00e1gszerte szervez ny\u00e1ri t\u00e1borokat, \u00f6szt\u00f6nd\u00edjprogramokat ind\u00edt, t\u00e1j\u00e9koztat\u00f3 anyagokat k\u00e9sz\u00edt, rendezv\u00e9nyeket szervez \u00e9s t\u00e1mogat\u00e1st ny\u00fajt a csal\u00e1doknak a speci\u00e1lis di\u00e9t\u00e1khoz.<\/p>\n

pku@pkuegyesulet.hu<\/a><\/p>\n

+36-30\/493-7738<\/a><\/p>\n <\/div>\n<\/div>\n\n

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AMMeC\n<\/h3>\n

Olaszorsz\u00e1g<\/strong><\/p>\n

AMMeC (Associazione Malattie Metaboliche Congenite) egy neurometabolikus betegs\u00e9gekkel foglalkoz\u00f3 olasz szervezet, amely betegek \u00e9s csal\u00e1djaik t\u00e1mogat\u00e1s\u00e1val foglalkozik. A szervezet c\u00e9lja az anyagcsere betegs\u00e9gekre val\u00f3 figyelemfelh\u00edv\u00e1s, a tudom\u00e1nyos kutat\u00e1s \u00e9s megel\u0151z\u00e9s b\u00e1tor\u00edt\u00e1sa \u00e9s annak biztos\u00edt\u00e1sa, hogy az ilyen betegs\u00e9ggel \u00e9l\u0151ket ell\u00e1t\u00f3 orvosok megfelel\u0151 k\u00e9pz\u00e9st kapjanak.<\/p>\n

ammec@ammec.it<\/a><\/p>\n

+39 349 7656574<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Cometa A.S.M.M.E (Padua)\n<\/h3>\n

Olaszorsz\u00e1g<\/strong><\/p>\n

A COMETA ASMME egy anyagcsere betegs\u00e9gekkel, k\u00f6zt\u00fck a PKU-val foglalkoz\u00f3 olasz szervezet. Elk\u00f6telezetten t\u00e1mogatj\u00e1k az \u00f6r\u00f6kl\u00f6tt anyagcsere betegs\u00e9gekkel \u00e9l\u0151 embereket, \u00e9s el\u0151mozd\u00edtj\u00e1k az anyagcserebetegs\u00e9gek kutat\u00e1s\u00e1nak finansz\u00edroz\u00e1s\u00e1t. A Cometa ASMME ezen fel\u00fcl ezen betegs\u00e9gek l\u00e9tez\u00e9s\u00e9re \u00e9s s\u00falyoss\u00e1g\u00e1ra is igyekszik felh\u00edvni a figyelmet, \u00e9s pr\u00f3b\u00e1lja az eg\u00e9szs\u00e9g\u00fcgyi hat\u00f3s\u00e1gok sz\u00e1m\u00e1ra vil\u00e1goss\u00e1 tenni azt a konkr\u00e9t \u00e9s folyamatos orvosi seg\u00edts\u00e9get, amely ezen szem\u00e9lyek t\u00e1rsadalmi integr\u00e1ci\u00f3j\u00e1nak lehet\u0151v\u00e9 t\u00e9tel\u00e9hez sz\u00fcks\u00e9ges.<\/p>\n

info@cometaasmme.org<\/a><\/p>\n

049.8962825<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Federaci\u00f3n Espa\u00f1ola de Enfermedades Metab\u00f3licas Hereditarias, (FEEMH)\n<\/h3>\n

Spanyolorsz\u00e1g<\/strong><\/p>\n

Az FEEMH egy spanyol non-profit szervezet, amelynek c\u00e9lja, hogy jav\u00edtsa az \u00f6r\u00f6kletes anyagcserebetegs\u00e9gekkel \u00e9l\u0151k \u00e9letmin\u0151s\u00e9g\u00e9t. A szervezet ezt pszichol\u00f3giai \u00e9s t\u00e1pl\u00e1lkoz\u00e1si t\u00e9m\u00e1j\u00fa m\u0171helybesz\u00e9lget\u00e9sek szervez\u00e9s\u00e9vel, alacsony feh\u00e9rjetartalm\u00fa \u00e9telek v\u00e1s\u00e1rl\u00e1s\u00e1nak p\u00e9nz\u00fcgyi t\u00e1mogat\u00e1s\u00e1val, figyelemfelh\u00edv\u00e1ssal, kutat\u00e1sban val\u00f3 r\u00e9szv\u00e9tellel \u00e9s az \u00fajsz\u00fcl\u00f6ttek region\u00e1lis szint\u0171 sz\u0171r\u00e9s\u00e9nek kiterjeszt\u00e9s\u00e9ben \u00e9s egys\u00e9ges\u00edt\u00e9s\u00e9ben val\u00f3 egy\u00fcttm\u0171k\u00f6d\u00e9ssel teszi.<\/p>\n

federacion@metabolicos.es<\/a><\/p>\n

+34 910 82 88 20<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Svenska PKU-f\u00f6reningen\n<\/h3>\n

Sv\u00e9dorsz\u00e1g<\/strong><\/p>\n

A Svenska PKU-f\u00f6reningen egy 1991-ben alap\u00edtott sv\u00e9d szervezet, amely a Ritka Betegs\u00e9gek Sz\u00f6vets\u00e9g\u00e9hez tartozik. A szervezet c\u00e9lja a PKU-val \u00e9l\u0151k \u00e9s csal\u00e1djaik \u00e9letmin\u0151s\u00e9g\u00e9nek jav\u00edt\u00e1sa. Ez t\u00fckr\u00f6z\u0151dik a szervezet c\u00e9ljaiban, amelyek egyike a PKU-val kapcsolatos ismeretek terjeszt\u00e9se, a lehets\u00e9ges \u00e9telek v\u00e1laszt\u00e9k\u00e1nak b\u0151v\u00edt\u00e9se \u00e9s a PKU-val kapcsolatos vil\u00e1gos ir\u00e1nyelvek el\u0151mozd\u00edt\u00e1sa.<\/p>\n

eva.falkcarlsson@pku.se<\/a><\/p>\n

marcus.strandepil@pku.se<\/a><\/p>\n

+46 73 336 58 18<\/a><\/p>\n <\/div>\n<\/div>\n\n

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PKU Aile Derne\u011fi\n<\/h3>\n

T\u00f6r\u00f6korsz\u00e1g<\/strong><\/p>\n

A PKU Aile Derne\u011fi egy PKU-val foglalkoz\u00f3 szervezet, amelynek tev\u00e9kenys\u00e9gei a PKU-val \u00e9l\u0151k \u00e9let\u00e9nek jav\u00edt\u00e1s\u00e1ra ir\u00e1nyulnak. E c\u00e9lok k\u00f6z\u00e9 tartozik PKU-val \u00e9l\u0151k kezel\u00e9s\u00e9vel kapcsolatos k\u00e9pz\u00e9s biztos\u00edt\u00e1sa, fogyat\u00e9kkal \u00e9l\u0151k sz\u00e1m\u00e1ra tervezett speci\u00e1lis nevel\u00e9si \/ rehabilit\u00e1ci\u00f3s programok el\u0151k\u00e9sz\u00edt\u00e9se \u00e9s megval\u00f3s\u00edt\u00e1sa \u00e9s di\u00e9t\u00e1s \u00e9lelmiszerekkel kapcsolatban folytatott egy\u00fcttm\u0171k\u00f6d\u00e9s az \u00e9rintett szervezetekkel.<\/p>\n

info@pkuaile.com<\/a><\/p>\n

212 613 42 81<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Les Feux Follets\n<\/h3>\n

Franciaorsz\u00e1g<\/strong><\/p>\n

A Les Feux Follets egy francia sz\u00f6vets\u00e9g, amelynek tagjai \u00f6r\u00f6kl\u00f6tt, szigor\u00fa \u00e9trendet k\u00f6vetel\u0151 anyagcsere betegs\u00e9gekkel, p\u00e9ld\u00e1ul PKU-val \u00e9l\u0151 gyermekek sz\u00fclei \u00e9s feln\u0151ttek. A szervezet k\u00fcldet\u00e9se tudom\u00e1nyos \u00e9s gy\u00f3gy\u00e1szati inform\u00e1ci\u00f3 tov\u00e1bb\u00edt\u00e1sa, tan\u00e1csad\u00e1s, tal\u00e1lkoz\u00f3kat szervezni csal\u00e1dok sz\u00e1m\u00e1ra, ahol tapasztalataikat kicser\u00e9lhetik, illetve adminisztrat\u00edv t\u00e1mogat\u00e1s ny\u00fajt\u00e1sa a csal\u00e1dok sz\u00e1m\u00e1ra.<\/p>\n

A Les Feux Follets sz\u00e1m\u00e1ra fontos, hogy maga k\u00f6r\u00e9 gy\u0171jtse az \u00e9rintett gyermekeket, fiatal feln\u0151tteket, feln\u0151tteket \u00e9s minden \u00e9rdekl\u0151d\u0151t, \u00e9s seg\u00edts\u00e9get \u00e9s t\u00e1mogat\u00e1st ny\u00fajtson nekik a betegs\u00e9g napi kezel\u00e9s\u00e9ben. Ezt sokf\u00e9lek\u00e9ppen igyekeznek el\u00e9rni. Az egyik lehet\u0151s\u00e9g region\u00e1lis m\u0171helytal\u00e1lkoz\u00f3k szervez\u00e9se a s\u00fct\u00e9s\/f\u0151z\u00e9s t\u00e9mak\u00f6r\u00e9r\u0151l a betegs\u00e9ggel \u00f6sszef\u00fcgg\u00e9sben.<\/p>\n

lesfeuxfollets@phenylcetonurie.org<\/a><\/p>\n

06 98 87 31 31<\/a><\/p>\n <\/div>\n<\/div>\n\n

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PKAUI\n<\/h3>\n

Ireland<\/strong><\/p>\n

The PKU Association of Ireland (PKUAI), established and managed by a voluntary group of community members, aims to assist and support those living with PKU in Ireland today.<\/p>\n

The PKUAI strive continuously for the best quality of care for those living with PKU through; raising awareness about the rare disease, advocating for more proactive and holistic lifelong care from diagnosis of newborns, continuing throughout childhood into older adulthood and providing a support network for our community.<\/p>\n

PKAUI believe with a more determined and scientific approach to treating PKU, people living with this rare disease will secure a better quality of life and be better able to reach their full potential.<\/p>\n

info@pku.ie<\/a> <\/p>\n

communications@pku.ie<\/a><\/p>\n <\/div>\n<\/div>\n\n

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The Hungarian Society for PKU\n<\/h3>\n

Hungary<\/strong><\/p>\n

Founded in 1990, the Hungarian Society for PKU provide dietary support, summer camps, scholarship programmes, support for events and information materials to families across Hungary.<\/p>\n

pku@pkuegyesulet.hu<\/a><\/p>\n

+36-30\/493-7738<\/p>\n <\/div>\n<\/div>\n\n

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APOFEN\n<\/h3>\n

Portugal<\/strong><\/p>\n

APOFEN is a non-profit association that, in Portugal, supports PKU and other inherited metabolic disorders of protein metabolism that, although with different pharmacological approaches, share a low-protein diet. Their mission is to ensure the improvement of the quality of life of patients in a close relationship with all of them.<\/p>\n

APOFEN promotes several activities throughout the year to accomplish their mission, such as: Mentorship Program; Family Support Program, \u201cYoung APOFEN\u201d Group, Psychological Support; Campaigns in kindergardens and schools; Cultural Weekends for young adults; Summer Camp; National Family Meeting; Regional Meetings (islands); Cooking Workshops and Thematic Meetings.<\/p>\n

geral@apofen.pt<\/a><\/p>\n

+351 917 007 569<\/a><\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-59","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nBeteg t\u00e1mogat\u00e1s | Live Unlimited PKU<\/title>\n<meta name=\"description\" content=\"Ezt a kamp\u00e1nyt a BioMarin finansz\u00edrozta \u00e9s fejlesztette ki hat betegcsoporttal \u00e9s azok betegtags\u00e1g\u00e1val egy\u00fcttm\u0171k\u00f6dve.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/pku.biomarin.com\/hu-hu\/liveunlimited\/beteg-tamogatas\/\" \/>\n<meta property=\"og:locale\" content=\"hu_HU\" \/>\n<meta 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