Wannan shafin yanar gizon yana amfani da kukis domin mu iya ba ku damar kwarewa mafi kyau. Ana adana bayanin kuki a cikin burauzarka kuma yana aiki da ayyuka kamar gane da ku idan kun dawo zuwa shafin yanar gizon mu da kuma taimaka wa tawagar mu fahimci wane ɓangaren shafin yanar gizon da kuka samu mafi ban sha'awa da amfani.
Haɗin EB: Jama'ar EB ɗin ku ta kan layi
EB Connect dandamali ne mai zaman kansa na kan layi kyauta don bulosa epidermolysis na duniya (EB) al'umma don haɗi tare da wasu.
Mun yi farin cikin samun damar raba tare da ku EB Connect - dandamalin haɗin gwiwar zamantakewa na kan layi kyauta, mai zaman kansa don duniya epidermolysis bullosa (EB) al'umma. Wuri ne don haɗin kai-da-tsara, inda zaku iya haɗawa da sauran mutanen da ke zaune tare da EB daga ko'ina cikin duniya.
Kuna iya raba gogewa, yin abokai, nemo wasu membobin al'umma ta amfani da taswirar mu'amala ta EB Connect, ko yin taɗi kawai. Hakanan zaka iya yin tambayoyin da ƙila ba za ku so ku tambayi ƙwararrun kiwon lafiya ba, kuma ku sami shawarwari da shawarwari masu amfani daga wasu mutanen da ke zaune tare da EB.
Kamar yadda EB Connect cibiyar sadarwar zamantakewa ce ga majinyatan EB da iyalai, yana buɗewa ga duk wanda EB ya shafa. Akwai ƙungiyoyi don kowane nau'in EB da ƙungiyoyin shekaru daban-daban.
DEBRA UK EB Connect shafi
Akwai kuma shafi da aka sadaukar don DEBRA UK. Shafi ne da ba kawai za ku iya haɗawa da mutane daga ko'ina cikin duniya ba, har ma da mafi kyawun rukuni don ku don tuntuɓar sauran membobin ƙungiyar EB a Burtaniya.
Shiga EB Connect kyauta
Shafin mu na Burtaniya sabo ne fiye da wasu. Don haɓaka damar yin haɗin kai mai mahimmanci akan dandamali, zai yi kyau a sami yawancin membobin ƙungiyar DEBRA UK da sauran al'ummar EB da suka yi rajista kamar yadda zai yiwu. Da fatan za a gaya wa sauran mutanen da kuka sani da su, ko abin da EB ya shafa, game da EB Connect.
Amfani da EB Connect
Kada ku jira ku kasance masu aiki a kan dandamali ko dai. Aiwatarwa ita ce hanya mafi kyau don yin hulɗa tare da wasu kuma fara haɗin gwiwa tare da ƙarin mutane a cikin al'umma.
Akwai hanyoyi da yawa don haɗawa da wasu. Misali, Ciyarwar Kai tsaye – cibiyar ayyuka don yin tambayoyi, raba sabuntawa game da abin da kuke yi, shawarwari masu taimako, hotuna, ra'ayoyin da ke ƙarfafa ku, da ƙari. Kuna iya aikawa da taɗi game da kowane nau'i na batutuwa, kamar raba manyan shawarwari kan sarrafa EB a cikin zafi, inda za ku sayi takalma masu kyau na EB, ko girke-girke da aka fi so.
Har ila yau, akwai wuraren zama - fili don ƙarin tattaunawa mai zurfi da tattaunawa kan batutuwa masu mahimmanci a gare ku.
Kuna iya samun ƙarin bayani game da fasalulluka na EB Connect da yadda ake amfani da su akan namu DEBRA UK page.
Muna fatan za ku sami wannan dandali ya zama hanya mai amfani don taimaka muku haɗi tare da faɗuwar al'ummar EB. Da fatan za a sanar da mu ra'ayin ku game da EB Connect ta hanyar imel feedback@debra.org.uk