Monga bungwe la umembala, tikufuna kupereka chithandizo chabwino kwambiri ndi chisamaliro kwa anthu okhala ndi EB. Tili ndi gulu lomwe lakumana ndi zovuta zambiri zomwe EB ingabweretse ndipo zitha kuthandiza mamembala m'njira zambiri zomwe zafotokozedwa pansipa. Timapanganso maubwenzi apamtima ndi anamwino apadera a EB, omwe ena mwa iwo amathandizidwa ndi DEBRA, komanso akatswiri ena azaumoyo ndi othandizira anthu kuti alumikizane ndi odwala ndi ntchito zomwe amafunikira kuti akhale ndi moyo wabwino. Gulu lathu laubwenzi limapezeka kuti lithandizire mamembala pafupipafupi momwe angafunikire.
Tili ndi gulu lodzipatulira lomwe lili ndi maluso osiyanasiyana, chidziwitso ndi chidziwitso chopereka chithandizo cha EB kuphatikiza zothandiza, zachuma, kuthandizira m'malingaliro ndi kulimbikitsa gulu la EB. Werengani zambiri
Kumanani ndi gulu lomwe likupereka chithandizo chofunikira cha EB, kuphatikiza zothandiza, zandalama komanso zolimbikitsa komanso kulimbikitsa gulu la EB. Werengani zambiri
Timazindikira kufunika kwa chithandizo cha anzathu kuti tigawane zomwe takumana nazo ndi anzathu komanso mabanja ena. Zochitika za DEBRA zimakupatsirani mwayi wosonkhana ndikusangalala ndi zochitika. Werengani zambiri
Ngati mukuvutika ndipo mukufuna thandizo, gulu lathu la Community Support lilipo kuti likuthandizeni pamalingaliro oyamba, kapena kukupatsani chikwangwani kuti mupitirize kukuthandizani pamaganizidwe, kuyambira Lolemba - Lachisanu (9am - 5pm). Werengani zambiri
Tsiku lililonse anthu 6,000 amakhala osamalira osalipidwa. Izi zitha kukhala zothandiza kaya inuyo ndinu osamalira nokha kapena mumalandira chithandizo kuchokera kwa wosamalira. Werengani zambiri
Anthu okhala ndi EB, ndi mabanja awo akhoza kukhala ndi ufulu wolandira phindu la boma kapena njira zina zothandizira ndalama, kuphatikizapo ndalama zoperekedwa ndi DEBRA. Werengani zambiri
Ngati mukukhala ndi EB mungafunike chithandizo panthawi yonse ya ntchito - kuyambira kufufuza ntchito ndi kufunsa mafunso mpaka kumvetsetsa malo ogwira ntchito ndi ufulu wa ntchito. Werengani zambiri
Anthu omwe ali ndi EB angafunike chithandizo paulendo wawo wamaphunziro, komanso kumvetsetsa EB ndi masukulu awo ndi anzawo. Werengani zambiri
Titha kumvetsera pamene muli ndi chisoni, kukupatsani chithandizo chowonjezereka m'dera lanu, kukuthandizani kukonza maliro, kukuthandizani kupeza zoyenera zopindula, komanso kukuthandizani kupanga tsamba la chikumbutso cha DEBRA. Werengani zambiri
Kwa odwala EB ndi mabanja awo omwe amakhala ku Scotland, akatswiri azachipatala a EB amachokera ku Royal Hospital for Children ku Glasgow (paediatrics) ndi Glasgow Royal Infirmary (akuluakulu). Werengani zambiri
Mamembala a DEBRA ali ndi mwayi wopeza chithandizo chaulere chapa intaneti Togetherall, komwe amatha kugawana zomwe akumana nazo ndikuthandizirana pagulu lotetezeka komanso lachinsinsi. Werengani zambiri
Ndife okondwa kugawana nanu EB Connect, nsanja yachinsinsi yapaintaneti yolumikizana ndi gulu lapadziko lonse la EB. Werengani zambiri
Iyi ndi foni yatsopano yochokera ku DEBRA's EB Community Support Team kwa anthu okhala ndi akatswiri azaumoyo a EB ndi EB. Tikhalapo Lolemba pakati pa 9am ndi 1pm kuti tiyankhe mafunso anu ndikusainira kuti muthandizire. Werengani zambiri