Kugwiritsa ntchito umembala wanu wa DEBRA
Timapereka maubwino ndi chithandizo chapadera kwa mamembala athu - anthu azaka zonse omwe amakhala kapena omwe akukhudzidwa mwachindunji ndi mitundu yonse ya EB ku UK.
Patsamba lino, mupeza zambiri zokhudza chilichonse chomwe mungapeze tsopano popeza mwalembetsa kuti zikuthandizeni kugwiritsa ntchito bwino umembala wanu wa DEBRA.
Chithandizo kwa anthu omwe ali ndi mitundu yonse ya EB
Gulu lathu la EB Community Support lili pano kuti likuthandizeni pa gawo lililonse la moyo wanu ndi EB. Kuyambira ku matenda oyamba mpaka kukuthandizani pantchito, kukuthandizani kupeza Blue Badge kapena kupeza thandizo lomwe mukufuna mukamayenda m'mabwalo a ndege.
Gulu lathu limapereka chithandizo chomvetsera, malangizo a akatswiri, komanso chithandizo chothandiza mukachifuna. Muthanso kugwiritsa ntchito zambiri za EB ndi zinthu zina patsamba lathu , ndikuyimbira EB Help Line yathu pa 01344 577689 , yomwe ikupezeka Lolemba-Lachisanu, 8am-5:30pm.
Kulumikizana ndi anthu ammudzi ndi zochitika
Timapereka zochitika zosiyanasiyana zapadera kwa mamembala chaka chonse, zomwe zimakupatsani mwayi wolumikizana ndi ena pamasom'pamaso kapena pa intaneti.
Gawani zomwe mwakumana nazo, mverani akatswiri a EB, kambiranani nkhani zofunika kwa anthu ammudzi wa EB, ndipo sangalalani kukhala limodzi ndikupanga mabwenzi atsopano.
Matchuthi apadera
Sangalalani ndi kukhala m'nyumba zathu zokongola za tchuthi , zomwe zili ku UK m'mapaki opambana mphoto a 5*, pamitengo yotsika mtengo kwambiri.
Pofuna kuthetsa mavuto ena okhudzana ndi kukonzekera tchuthi kwa mabanja omwe ali ndi EB, tasintha nyumba zathu za tchuthi kuti zigwirizane ndi zosowa zosiyanasiyana za anthu ammudzi wa EB.
Mwayi wophatikizidwa
Timaika mawu a mamembala athu pakati pa chilichonse chomwe timachita, ndipo pali njira zambiri zosangalatsa zochitira nawo.
Mutha kutenga nawo mbali m'mapulojekiti apadera a mamembala, kuthandiza kukonza tsogolo la ntchito zathu za EB, kusankha kafukufuku yemwe tidzathandizira pambuyo pake, ndi zina zambiri.
Khalani oyamba kudziwa
Ndi maimelo athu ndi makalata athu osindikizidwa, mudzapeza nkhani ndi zinthu zatsopano kwa anthu omwe ali ndi EB ndikumva za mankhwala atsopano akapezeka. Muthanso kupeza zambiri zonse za EB ndi zinthu zina nthawi iliyonse.
Kodi mukudziwa wina aliyense amene amakhala ndi EB yemwe si membala wa DEBRA?
Tikakhala ndi mamembala ambiri, zimakhala zosavuta kwa ife kuchita izi:
- Onetsani kuchuluka kwa EB, kuti tithe kutsimikizira kuchuluka kwa anthu omwe akhudzidwa.
- Limbikitsani kafukufuku wabwino komanso kupeza ndalama zogulira mankhwala atsopano ndikupeza njira zatsopano zochiritsira.
- Pemphani boma, NHS, ndi mabungwe ena kuti akonze mautumiki ndi ufulu wa anthu omwe ali ndi EB.
Ngati simukupeza zomwe mukufuna kapena mungafune kulankhula ndi munthu wina, chonde titumizireni, tabwera kuti tikuthandizeni.