Maudindo otsatsa ndi kulumikizana kwa mamembala
Kodi mungafune mwayi woti muthandizire kukonza malonda athu ndi kulumikizana kwathu? Tikufuna kuwonetsetsa kuti malonda athu ndi mauthenga akuwonetsa mawu a mamembala athu, ndipo mukhoza kuthandiza!
Tisintha tsamba ili pomwe maudindo atsopano akubwera.
Kodi mwakumana ndi zotani ndi mankhwala a EB? Tikupanga kampeni yatsopano yokhudza nkhani za anthu kuti tithetse mavuto omwe mamembala ambiri amakumana nawo akamayesa kupeza mankhwala a EB omwe amafunikira. Kuti titsimikizire kuti ntchitoyi ikugwirizana ndi zomwe zachitikadi, tikufuna kumva kuchokera kwa inu.
Chifukwa chiyani mawu anu ali ofunika
Tikumva kuti mamembala ena akukumana ndi mavuto pamene madokotala akusintha mavalidwe apadera a EB omwe madokotala a EB amapereka kwa madokotala ena otsika mtengo komanso wamba omwe sakwaniritsa zosowa zawo. Izi zingayambitse ululu, chiopsezo chowonjezeka cha matenda, komanso kuvutika maganizo komwe kungapeweke.
Tikufunanso kumva za zomwe mwakumana nazo pa:
- Zotsatira zachuma za mankhwala a EB (ku England kokha)
(Odwala a EB pakadali pano sakuyenerera kulandira mankhwala aulere okha) - Mavuto ena aliwonse omwe mumakumana nawo kuti mupeze zinthu zofunika kuti muzitha kusamalira EB mosamala
Malingaliro anu atithandiza kupanga kampeni yokhala ndi zotsatira zenizeni ndikulimbikitsa kusintha kwakukulu.
Tithandizeni kudziwitsa a MP/MS/MSP akudera lanu ndikuwonetsetsa kuti akudziwa za EB ndi zovuta zomwe anthu okhala ndi mitundu yonse ya EB amakumana nazo tsiku lililonse.
Kuti tidziwitse a EB ndikuwalimbikitsa kuti athandizire kupititsa patsogolo ntchito zachipatala za EB, tingakhale othokoza ngati mungalembere, kapena imelo, MP/MS/MSP ya kwanuko ndikuwapempha kukumana nanu.
Kuti zikhale zosavuta kwa inu, tapanga chitsanzo cha kalata yoti mugwiritse ntchito. Pali mitundu iwiri, kutengera ngati muli ndi sitolo ya DEBRA UK m'dera lanu. Ngati mukufuna kufufuza, mutha kupeza sitolo yapafupi nanu apa.
Mutha kudziwa kuti ndani wandale kwanuko ndi momwe mungawayankhire powachezera:
Tikufuna thandizo kuchokera kwa anthu osiyanasiyana kuti muwonetsetse kuti muli ndi chithandizo choyenera chamankhwala chomwe mukufuna lero komanso chithandizo chamawa mawa. Boma la m'deralo ndi dziko lonse lingatithandize kukwaniritsa izi, kotero ngati mungapeze nthawi, chonde tengani nawo mbali. Pongolemba kalata mutha KUKHALA kusiyana kwa EB.
Chonde tithandizeni kufalitsa uthenga wokhudza EB Connect pamayendedwe anu ochezera.
Nthawi zambiri timamva kuchokera kwa mamembala kuti akufuna mwayi wolumikizana mwachindunji ndi ena omwe ali ndi EB, kugawana zomwe akumana nazo, malangizo apamwamba ndi chithandizo. EB Connect ndi njira imodzi yochitira izi. Ndibwalo laulere pa intaneti la anthu omwe akhudzidwa ndi EB. Mutha kulembetsa pansipa koma chonde sankhani DEBRA UK ngati amodzi mwamagulu omwe mukufuna kulowa nawo.
Kuti tithandizire kuti gulu la DEBRA UK likhazikitsidwe, tikufunika thandizo lanu kufalitsa ntchitoyi. Chonde tumizani zamwambowu pamapulatifomu anu ochezera ndikulimbikitsa omwe akhudzidwa ndi EB kuti alowe nawo gulu la DEBRA UK. Yang'anani ndikuyamba kulumikizana ndi mamembala m'dziko lonselo.
Monga mwachizolowezi, tikufuna kumva momwe nkhaniyi ikugwirira ntchito kwa inu. Lumikizanani nafe potumiza imelo ku feedback@debra.org.uk.