Ikwu ọdịnaya

Iso ndị otu

Anyị na-etinye olu ndị otu anyị n'isi ihe niile anyị na-eme na DEBRA. Yabụ ọ bụrụ na-amasị gị iji ahụmịhe gị na-akpụzi ọdịnihu nke ọrụ EB anyị, kpebie nyocha anyị ga-akwado na-esote ma ọ bụ iji kwalite mmemme anyị, enwere ọtụtụ itinye aka na ya. Onye ọ bụla na-etinye aka na-eme ka anyị na obodo niile nwee nnukwu ihe dị iche.

Ọ bụrụ na ị bụ onye otu ị nwere ike ịdebanye aha na netwọk ntinye aka anyị iji nweta ozi-e gbasara ohere ọhụrụ ka ha na-abịa.

 

Debanye aha na netwọk nsonye anyị

Mmadụ na-esonye na ogbako vidiyo na laptọọpụ, yana mmadụ isii na obere windo vidiyo na ihuenyo.

Ntinye aka nyocha EB

Mụtakwuo
Otu nwanyị nwere ogologo isi awọ na-agụpụta n'akwụkwọ ụmụaka, na-eyi uwe ifuru na aha aha.

Kọọ akụkọ gị

Mụtakwuo
Otu nwoke yi uwe elu na-acha anụnụ anụnụ na-agwa otu nwa agbọghọ nwere bandeeji, ya na ezinụlọ ya nọ ọdụ n'oche, na-ejide akwụkwọ.

Melite nkwado maka EB

Mụtakwuo
Aka na-ejide enyo na-ebuli elu n'elu otu ihe oyiyi osisi, nke na-anọchi anya igwe mmadụ ma ọ bụ ndị na-ege ntị, megide ndabere dị larịị.

Ọmụmụ ihe EB

Mụtakwuo
Otu nwoke yi uwe elu akwụkwọ ndụ akwụkwọ ndụ na-amụmụ ọnụ ọchị ma nọdụ n'akụkụ otu nwa agbọghọ nwere aka kechie ya.

Bụrụ onye otu DEBRA

Anyị bụ ndị ọrụ ebere mba maka ndị bi na epidermolysis bullosa (EB) na UK. Anyị na-agba mbọ ịkwado EB...
Mụtakwuo
Ụmụaka abụọ nwere EB, nọ ọdụ na ịmụmụ ọnụ ọchị.

James Lind Alliance

Mụtakwuo
Otu nwoke nwere afụ ọnụ, onye wepụtara onwe ya maka DEBRA UK, na-agwa otu nwanyị okwu n'ebe a na-ere ahịa ọrụ ebere DEBRA. N'azụ ha, ihuenyo na-egosiputa akara DEBRA.

Onye ọrụ afọ ofufo maka DEBRA UK

Mụtakwuo
Otu nnukwu ìgwè mmadụ, na-aga otu n'ime mmemme ndị otu DEBRA UK, nọ ọdụ na tebụl gburugburu n'ụlọ oriri na ọṅụṅụ na-acha odo odo, na-eme mkparịta ụka na-ekpo ọkụ na iri nri.

Mmemme ndị otu DEBRA UK

Mụtakwuo
Igwe ọkụ na-enwu ọkụ nwere okwu "echiche" n'ime ya n'okirikiri tii.

Ọrụ ahịa na nkwukọrịta maka ndị otu

Mụtakwuo
Ederede nnyapade edo edo nke nwere okwu "Nzaghachi" dabere n'elu ndetu nnyapade ndị ọzọ mara mma.

Nzaghachi gị dị oke mkpa

A na-emepụta ozi anyị site na ntinye sitere na ndị ọrịa, ndị ọkachamara EB (epidermolysis bullosa) na ndị ọkachamara, gụnyere ndị otu nwere ahụmahụ. Na...
Mụtakwuo