Nadir G\u00f6r\u00fclen Hastal\u0131klar A\u011f\u0131 (NGHA), \u00fcyeleriyle ilk kez Evrensel Hasta Haklar\u0131 Derne\u011fi\u2019nde bir araya geldi.<\/p>\n\n\n\n
Nadir G\u00f6r\u00fclen Hastal\u0131klar A\u011f\u0131 (NGHA), \u00fcyeleriyle ilk kez Evrensel Hasta Haklar\u0131 Derne\u011fi\u2019nde bir araya geldi.<\/p>\n\n\n\n
A\u011f \u00fcyelerinden birinin sahip oldu\u011fu, Limb-girdle m\u00fcsk\u00fcler distrofisi (LGMD) g\u00fcn\u00fcnde bir araya gelen A\u011f \u00fcyeleri hastal\u0131kla ilgili de bilgi payla\u015farak fark\u0131ndal\u0131k yaratt\u0131. <\/p>\n\n\n\n
Nadir G\u00f6r\u00fclen Hastal\u0131klar A\u011f\u0131\u2019ndan yap\u0131lan yaz\u0131l\u0131 a\u00e7\u0131klamada, Limb-girdle m\u00fcsk\u00fcler distrofisi (LGMD) hastal\u0131\u011f\u0131n\u0131n, \u00e7ocukluk, ergenlik, gen\u00e7 yeti\u015fkinlik ve hatta daha sonraki ya\u015flarda ba\u015flayabilen, her iki cinsiyetin de e\u015fit olarak etkilendi\u011fi genetik ge\u00e7i\u015fli ve bir\u00e7ok alt tipi olan bir hastal\u0131k grubu oldu\u011fu belirtildi.<\/p>\n\n\n\n
COVID-19 pandemisi nedeniyle daha \u00f6nce tan\u0131\u015f\u0131p bir araya gelme f\u0131rsat\u0131 bulamayan A\u011f \u00fcyeleri bir araya gelerek ya\u015fad\u0131klar\u0131 sorunlar\u0131 payla\u015ft\u0131. Hastal\u0131klar\u0131n\u0131n nadir olmas\u0131ndan dolay\u0131, te\u015fhis almada zorluk ya\u015fad\u0131klar\u0131n\u0131 aktaran A\u011f \u00fcyeleri, kendilerini ve ya\u015fad\u0131klar\u0131 s\u0131k\u0131nt\u0131lar\u0131 yetkililerin anlamad\u0131\u011f\u0131n\u0131 ve say\u0131 olarak az olduklar\u0131 i\u00e7in de sorunlar\u0131n\u0131n g\u00f6rmezden gelindi\u011fini belirtti.<\/p>\n\n\n\n
NGHA, KKTC\u2019de var olan nadir hastal\u0131k t\u00fcrlerini raporlamak, sa\u011fl\u0131k \u00e7al\u0131\u015fanlar\u0131n\u0131n nadir g\u00f6r\u00fclen hastal\u0131klara dair alg\u0131s\u0131n\u0131 de\u011ferlendirmek, nadir hastal\u0131klara sahip olan bireylerin ya\u015famakta oldu\u011fu sorunlar\u0131n \u00e7\u00f6z\u00fcm\u00fcne y\u00f6nelik \u00f6rg\u00fctlenmelerine destek vermek i\u00e7in savunuculuk \u00e7al\u0131\u015fmalar\u0131 yapmak amac\u0131yla A\u011fustos 2020\u2019de EHHD\u2019nin inisiyatifi ile kurulmu\u015ftu.<\/p>\n\n\n\n
A\u011f, \u015fu anda \u201cNadir Hastal\u0131klar Fark\u0131ndal\u0131k \u00c7al\u0131\u015fmas\u0131\u201d projesini Avrupa Birli\u011fi (AB) taraf\u0131ndan finanse edilen \u201cSivil B\u00fcy\u00fc\u201d program\u0131n\u0131n deste\u011fiyle y\u00fcr\u00fct\u00fcyor.<\/p>\n\n\n\n
A\u011f, Ocak 2023\u2019te t\u00fcm payda\u015flar\u0131 i\u00e7eren bir konferans d\u00fczenleyerek, KKTC\u2019deki nadir hastal\u0131klar\u0131n raporlanmas\u0131, nadir hastalar i\u00e7in b\u00fct\u00fcnl\u00fckl\u00fc ve kapsay\u0131c\u0131 politikalar\u0131n geli\u015ftirilmesi i\u00e7in ihtiya\u00e7lar\u0131n tespit edilmesi a\u015famas\u0131nda katk\u0131 sa\u011flamay\u0131 planl\u0131yor.<\/p>\n\n\n\n
Konferans sonucunda \u00e7\u0131kan durum raporu ve \u00f6neriler, ilgili payda\u015flara iletilip lobicilik yap\u0131lacak.<\/p>\n\n\n\n
-A\u011f\u2019a kat\u0131lmak isteyenlere a\u00e7\u0131k \u00e7a\u011fr\u0131\u2026<\/p>\n\n\n\n
A\u011f\u2019dan yap\u0131lan a\u00e7\u0131klamada, kat\u0131lmak isteyenlere \u00e7a\u011fr\u0131 yap\u0131larak \u201cNadir g\u00f6r\u00fclen hastal\u0131\u011fa sahipseniz, yak\u0131nlar\u0131n\u0131z nadir hastal\u0131ktan dolay\u0131 te\u015fhis, tetkik ve tedavilerinde s\u0131k\u0131nt\u0131 ya\u015f\u0131yorsa veya nadir g\u00f6r\u00fclen bir hastal\u0131kla m\u00fccadele eden, ara\u015ft\u0131rma yapan bir kurum ve kurulu\u015f iseniz, sizleri A\u011f\u2019a kat\u0131lmaya ve destek vermeye davet ederiz.\u201d ifadelerine yer verildi.<\/p>\n\n\n\n
Destek vermek ve daha fazla bilgi almak isteyenler info@ehhd.eu adresine veya 0392 228 83 37 numaral\u0131 telefondan Evrensel Hasta Haklar\u0131 Derne\u011fi\u2019ne ula\u015fabiliyor.<\/p>","protected":false},"excerpt":{"rendered":"
Nadir G\u00f6r\u00fclen Hastal\u0131klar A\u011f\u0131 (NGHA), \u00fcyeleriyle ilk kez Evrensel Hasta Haklar\u0131 Derne\u011fi\u2019nde bir araya geldi. Nadir G\u00f6r\u00fclen Hastal\u0131klar A\u011f\u0131 (NGHA), \u00fcyeleriyle ilk kez Evrensel Hasta Haklar\u0131 Derne\u011fi\u2019nde bir araya geldi. A\u011f \u00fcyelerinden birinin sahip oldu\u011fu, Limb-girdle m\u00fcsk\u00fcler distrofisi (LGMD) g\u00fcn\u00fcnde bir araya gelen A\u011f \u00fcyeleri hastal\u0131kla ilgili de bilgi payla\u015farak fark\u0131ndal\u0131k yaratt\u0131. Nadir G\u00f6r\u00fclen Hastal\u0131klar […]<\/p>","protected":false},"author":1,"featured_media":9505,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[81],"tags":[1276],"class_list":["post-9504","post","type-post","status-publish","format-standard","has-post-thumbnail","category-gundem","tag-nadir-gorulen-hastaliklar-agi-dayanisma-toplantisiyla-bir-araya-geldi"],"yoast_head":"\n