Svondo rino, Kukadzi 28, inopembererwa zuva reWorld Rare Diseases Day. Gore rino Sangano reSpain rakaparura mushandirapamwe uine sirogani Zviratidzo zveTariro. Chinangwa chayo kutsvaga mubatanidzwa, kuzvipira uye kurwira kwenzanga yese mukutarisana nekushomeka kweboka iri pakati pehosha.
Para Vana, mhuri uye vanhu vanoonekwa vaine ER, chirwere chisingawanzoitika, mamiriro acho akawedzeredzwa neCOVID-19. MuSpain, chete mumafungu ekutanga, 91% yekutarisirwa kwezvirwere zvisingawanzoitika yakamiswa. Kune izvi zvinofanirwa kuwedzerwa kuoma mitezo kwekuongorora, uye kwekurapa nzira. Takatarisana nemamiriro ezvinhu aya, mhinduro yekutanga yanga iri yeyecheferensi inosanganisa machira pachawo.
Kufungirwa kwakakosha kweVana vane RD Panguva Yekupararira
Zvose vanhu vane zvirwere zvisingawanzoitika parizvino boka rine njodzi huru reCOVID-19. Kunyanya uye sekukoshesa kune avo vese vane (ER), zvisingawanzo zvirwere zvekufema uye nemoyo, izvo zviri zvirwere zvakakomba zvinonyanya kunetseka kune zvakashata mhedzisiro ye coronavirus.
ari zvisingawanzo hosha dzinoonekwa muhudiki mune maviri kubva matatu kesi uye ivo vanogona kutungamira mukuremara kukuru mukuzvitonga, kunoisa pangozi kufungidzira kwakakosha kwevarwere, uyezve kwemhuri dzinogara navo. MuSpain zvinotora avhareji yemakore mana kuti uwane kuongororwa.
Vana vane RD avo vanoda kutarisirwa kwakasarudzika mune hutano uye hwemagariro nzvimbo vakaona kutarisirwa uku kuchikanganiswa nedenda mamiriro. Sevadiki, kazhinji, vasingaite chikamu chengozi, vana vane RD havasi kuwana kuongororwa bvunzo, kunze kwekunge vauya nezviratidzo zvemberi, kunze kwenguva yekudzivirira. Kushaikwa kwekuwana kunogona kuve nemhedzisiro. Kuongororwa kwechimbichimbi kwakakosha kudzivirira kunetsekana uye kutapuriranwa kwevanovachengeta nehama, zvakakosha mukutarisirwa kwavo.
Iko Kusungwa Kunobata Sei Vana NeRD
Kuvharirwa pamba kweye yekutanga wave, kubva munaKurume kusvika munaJune, inokanganisa manzwiro uye hunhu mamiriro evana nevechiri kuyaruka vane zvisingawanzo zvirwere. Iyi ndiyo imwe yemhedzisiro mhedziso yechidzidzo chakaitwa kuchipatara chemai nemwana che Sant Joan de Déu. Chidzidzo chinojekesa kuti zvichizoitika maitiro ekuvandudza uye kupora zvakawonekwa zvakare.
Mukati mekudzidza nezvematambudziko ehutano hwepfungwa angangove akakonzerwa nedenda mune vadiki, Sub-projekiti yakaitwa, inonzi Encovid, inoenderana nezvirwere zvisingawanzoitika, kunyanya avo vane genetic. Chinangwa chave chekuona matambudziko eomatic, emanzwiro uye ehunhu angave akagadzirwa nedenda muvana ava.
Chidzidzo chakanangana neRD chaverengerwa nevarwere mazana maviri negumi nemapfumbamwe kubva pa298 kusvika pamakore gumi nemasere, vazhinji vacho vanobva kuCatalonia. Vanga vari vabereki kana vachengeti vakapindura kuongororwa kwepfungwa uye bvunzo. Mhedzisiro yemhedzisiro yechidzidzo ichi inoratidza kuti denda iri rakabata kurapwa nekurapa nenzira yakajairika. Nekudaro, vabereki nevachengeti vanokoshesa kurapwa kunogamuchirwa kuburikidza nefoni kana murwere portal.
Nhasi kune vana vane zvisingawanzo zvirwere
Rinenge gore mushure mekutanga kuziviswa kwenyika yealam, Matambudziko anoenderera mberi mukutarisirwa kwekutanga, mune yekukurumidzira mukamuri kana pane yekumirira zvinyorwa. Nezve RD, Juan Carrión, purezidhendi weFEDER neSangano rayo anotsanangura kuti kune mhuri dzinoti, pamusoro pekuvharirwa kubva pakutanga nekutya kutapukirwa, vanofanirwa kufunga kuti matambudziko avo anoenderera mberi kana zvese zvapfuura. Matambudziko akakomba ekuwana kuongororwa uye kurapwa kwakabata vana, avo vaivepo pamberi pe COVID-19, yakachengetedzwa nekuenderera mberi.
European Alliance yeRare Zvirwere (EURORDIS) inoratidza izvozvo vanhu vanorarama nechirwere chisingawanzo kutove nerusarura. Uku kusarura kunoratidzwa mumakiriniki mirau yakagadzirirwa vanachiremba nechimbichimbi. Izvo zvinokurudzirwa kutora chaiwo matanho kana zvirevo zvekurapwa kwevana vane RD nemhuri dzavo panguva yedenda.
Iyo Spanish Federation yeRare Zvirwere (FEDER), pamberi pesimba re COVID-19, yambiro nezvekudiwa kwekudzivirira uye kufunga seboka rinonyanya kutambura kuvana uye mhuri dzavo vanogara nezvirwere izvi kana vasina chirwere.