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 gwiwar kamfanoni
Haɗin gwiwar kamfanoni suna taka muhimmiyar rawa a cikin tafiya zuwa #Dakatar da Ciwon EB. Haɗin gwiwar kamfani tare da DEBRA na iya zama dabara da canji ga kamfanin ku da DEBRA, shigar da ma'aikatan ku da kuma taimaka wa kamfanin ku cimma burin ku na ESG.
Tare da goyon bayan ku za mu iya sa yau mafi kyau ga mutanen da ke zaune tare da kowane nau'in EB da kuma samar da ainihin bege ga wani nan gaba free of zafi.
Bambancin mu BE don roko na EB yana nufin haɓakawa £5m don samar da ingantaccen kulawa da tallafi na EB na yau, Da kuma ingantattun magungunan magani ga kowane nau'in EB na gobe. Tare da wannan tallafin muna shirin:
- tayin ƙwararrun shawarwarin lafiyar hankali da albarkatun ga al'ummar EB.
- tayin karin tallafin kudi ga al'ummar EB ciki har da kudade don samfuran ƙwararrun don rage alamun EB, da tallafi da/ko sanya hannu kan tallafin kuɗi da ake samu don tabbatar da kowane memba zai iya halartar mahimman alƙawuran kiwon lafiyar EB ɗin su.
- tayin samun dama ga ƙungiyar tallafin al'umma ta DEBRA UK EB gami da shirin abubuwan EB Connect na yanki.
- ci gaba da hanzarta shirin mu na dawo da muggan ƙwayoyi yayin da muke neman tabbatar da ingantattun magungunan magani ga kowane nau'in EB.
Zazzage ƙasidar haɗin gwiwar kamfanoni
Ko don Allah tuntuɓi Ann Avarne, Manajan Haɗin gwiwar kamfanoni, don ƙarin bayani.
"Abu mafi muni game da EB shine zafi. Ciwon yana da ban mamaki, ciwon yau da kullum ne ba ya tafi. Sannan akwai ƙaiƙayi. Wasu kwanaki babu ƙaiƙayi wani lokacin kuma ina da kwanaki da ba zan iya daina ƙaiƙayi ba. Tabon fatar jikina, da hadewar yatsuna, da raguwar fatar jikina sai karuwa suke yi idan na girma wanda hakan zai kara min wahala. Wannan shine dalilin da ya sa nake son ingantattun jiyya na miyagun ƙwayoyi kuma a ƙarshe maganin EB.
Fazeel Irfan, 17
Yana rayuwa tare da recessive dystrophic epidermolysis bullosa (RDEB)
Kamfanin ku na iya taka wani bangare kuma BE bambanci ga EB
Bayar da kamfani da farko zai haifar da wani abin nunawa, bambanci mai ma'ana ta hanyar samar da makullin kuɗi don yankuna huɗu waɗanda ke da mahimmanci ga mutanen da ke zaune tare da EB.
Binciken majagaba wanda ya haɗa da saka hannun jari a shirye-shiryen sake fasalin ƙwayoyi waɗanda ke da nufin tabbatar da ingantattun jiyya na ƙwayoyi ga kowane nau'in EB.
Kulawa da tallafi don haɓaka ingancin rayuwa ga daidaikun mutane da iyalai da ke zaune tare da EB.
Ta hanyar samun damar memba zuwa gidajen hutu na DEBRA UK da ke cikin Burtaniya.
DEBRA UK tana aiki tare da haɗin gwiwa tare da NHS don ba da ingantaccen sabis na kiwon lafiya na EB.
Me ya sa yanzu?
"Muna rayuwa ne a cikin wani zamani mai girma na kimiyya da likitanci, wanda ya haifar da damar gaske don ci gaba a cikin binciken EB game da jiyya na gaba, amma ana buƙatar waɗannan jiyya a yanzu; marasa lafiya da ke zaune tare da EB ba za su iya jira ba, suna buƙatar ingantaccen sarrafa alamun, ingantacciyar rayuwa, da fatan gaske cewa za a sami magani nan ba da jimawa ba. Tare da taimakon ku za mu iya haɓaka taki da faɗin bincikenmu game da jiyya kuma tare za mu iya cimma wannan buri mai mahimmanci kuma tafiya mai mahimmanci don canza rayuwa da kawo ƙarshen wahala. "
Tony Byrne, Shugaba DEBRA UK