Chii chinokodzera chirwere chisingawanzoitiki?
Chirwere chisingawanzoitiki chinowanikwa muvanhu vasati vasvika 200 000 muUnited States uye pasi pe5 pavanhu 10 000 muEuropean Union. Sezvaunogona kufungidzira, pane zvimwe zvirwere izvo zvinongobatsira zvishoma zvishomanana zvevanhu munyika. Uye kune zvimwe zvirwere zviri zvechokwadi-zve-a-kind, kazhinji zvichiitika nekuda kwechiremera chemafuro.
Zvimwe zvirwere zvakapararira kune dzimwe nzvimbo dzenyika asi zvisingawani kune vamwe. Inofungidzirwa kuti kune pakati pe5 000 ne8 000 zvirwere zvinonyanya kuzivikanwa munyika.
Ndinoda kuziva kana chirwere chinenge chichionekwa chisingawanzoitiki.
Ihofisi yeUnited States yeRare Diseases ine mazita ezvirwere zvinopfuura 6 000 zvinonzi hazvishamisi muUnited States.
Ndinoda ruzivo pane chirwere chisingawanzoitiki.
Iwe unogona kutarisa pamusoro pehuwandu hwemafabheti nezita rezvirwere. Kana iwe usingazivi zita kana kuti uripire, iwe unogona kutarisa mapepa ezvirwere zvekutsvaga panzvimbo ino kune zvinyorwa zvakatanidzwa nerudzi rwemhando (somuenzaniso, neurological disorders, zvinetso zveganda, nezvimwewo).
Ndinoda ruzivo pane chirwere chisingawaniki chisina kunyorwa pane yako yepaiti.
Kana iwe usingakwanisi kuwana zvaunoda, chengetedza nzvimbo idzi:
- MuUnited States: The Genetic and Rare Diseases Information Center, paunogona kutaurirana munhu mupenyu ari nemibvunzo yakananga pamusoro peswere chako.
- MuUnited States: Taura neNhoroondo yeMhuri yezvimwe zviitiko uye zvinetso zvekare
- MuEurope: Orphanet - inowanikwa mumitauro 6: Shona, French, German, Italian, Spanish and Portuguese.
Ndingawana sei boka rekutsigira kwechimwe chirwere kana chirwere?
Chokutanga, tsvaga imwe nyaya pamusoro pehutano uri pawebsite. Iwe unogona kutarisa mapepa ezvirwere zvehutano panzvimbo ino yekunyoresa kana iwe usingazivi zita rechirwere.
Nyaya yacho ichange iine chibatanidzwa chekutsigira mapoka. Kana kusati kwambova nenyaya pamusoro pechirwere, edza peji re Support Support resources, rinobatanidza kumarudzi akasiyana-siyana eUnited States uye munyika dzakawanda asingatsigiri zvirwere.