EB Txuas: Koj lub zej zog EB online
EB Txuas yog qhov pub dawb, ntiag tug online social platform rau lub ntiaj teb epidermolysis bullosa (EB) zej zog sib txuas nrog lwm tus.
Peb zoo siab uas peb tau qhia rau nej txog EB Connect - ib lub platform sib koom tes hauv online pub dawb, ntiag tug rau lub zej zog epidermolysis bullosa (EB) thoob ntiaj teb . Nws yog ib qho chaw rau kev sib txuas lus ntawm cov phooj ywg, qhov chaw uas koj tuaj yeem sib txuas lus nrog lwm tus neeg uas muaj tus kab mob EB los ntawm thoob plaws lub ntiaj teb.
Koj tuaj yeem qhia cov kev paub dhau los, ua phooj ywg, nrhiav lwm tus neeg hauv zej zog siv EB Connect daim ntawv qhia kev sib tham, lossis tsuas yog muaj kev sib tham. Koj tuaj yeem nug cov lus nug uas koj yuav tsis xav nug tus kws kho mob, thiab nrhiav cov lus qhia thiab cov lus qhia muaj txiaj ntsig los ntawm lwm tus neeg nyob nrog EB.
Raws li EB Connect yog kev sib raug zoo rau EB cov neeg mob thiab tsev neeg, nws qhib rau txhua tus neeg cuam tshuam los ntawm EB. Muaj pab pawg rau txhua hom EB thiab cov hnub nyoog sib txawv.
DEBRA UK EB Connect page
Tseem muaj ib nplooj ntawv tshwj xeeb rau DEBRA UK . Nws yog ib nplooj ntawv uas koj tsis tsuas yog tuaj yeem sib txuas lus nrog cov neeg los ntawm thoob plaws lub ntiaj teb, tab sis kuj yog pawg zoo tshaj plaws rau koj los sib txuas lus nrog lwm tus tswv cuab ntawm lub zej zog EB hauv UK.
Koom nrog EB Txuas dawb
Peb nplooj ntawv UK yog tshiab dua li qee qhov ntawm lwm tus. Txhawm rau kom muaj lub cib fim los tsim kev sib txuas tseem ceeb ntawm lub platform, nws yuav zoo heev kom muaj ntau tus tswv cuab ntawm DEBRA UK cov tswv cuab thiab dav EB zej zog tau kos npe raws li qhov ua tau. Thov qhia rau lwm tus neeg uas koj paub nrog, lossis cuam tshuam los ntawm EB, txog EB Txuas.
Siv EB Txuas
Tsis txhob tos kom ua haujlwm ntawm lub platform ib yam nkaus. Kev tshaj tawm yog txoj hauv kev zoo tshaj plaws los koom nrog lwm tus thiab pib sib txuas nrog ntau tus neeg hauv zej zog.
Muaj ntau txoj hauv kev los txuas nrog lwm tus. Piv txwv li, Live Feed - qhov chaw ua haujlwm los nug cov lus nug, qhia cov xov xwm tshiab txog koj li cas, cov lus qhia muaj txiaj ntsig, duab, cov tswv yim uas txhawb koj, thiab ntau dua. Koj tuaj yeem tshaj tawm thiab sib tham txog txhua yam ntawm cov ncauj lus, xws li sib qhia cov lus qhia saum toj kawg nkaus ntawm kev tswj hwm EB hauv tshav kub, qhov twg yuav cov khau zoo EB, lossis cov zaub mov nyiam.
Kuj tseem muaj Cov Rooj Sib Tham - qhov chaw rau kev sib tham hauv qhov tob thiab sib tham txog cov ncauj lus uas tseem ceeb rau koj.
Koj tuaj yeem nrhiav cov ntaub ntawv ntxiv txog EB Connect cov yam ntxwv thiab yuav siv lawv li cas ntawm peb nplooj ntawv DEBRA UK.
Peb vam tias koj yuav pom lub platform no ua ib qho chaw pab tau koj txuas nrog cov zej zog EB dav dua. Thov qhia rau peb paub koj xav li cas txog EB Connect los ntawm kev xa email rau feedback@debra.org.uk