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.
BE bambanci ga EB
2023 shekara ce mai mahimmanci ga al'ummar epidermolysis bullosa (EB). Roko na 'A Life Free of Pain', wanda da yawa daga cikinku suka goyi bayansa kuma ya haɗa da Mataimakin Shugaban DEBRA, Graeme Souness, ninkaya ta tashar Turanci, ya kawo EB ga hankalin jama'a, kuma ya ba da kuɗin da ake buƙata sosai wanda ya ba da damar EB na farko. miyagun ƙwayoyi sake fasalin gwajin asibiti da za a ba da izini.
Har yanzu da sauran abubuwa da yawa a yi, kodayake…
EB wani yanayi ne da ba kasafai ba, na kwayoyin halitta na fata wanda ke sa fata ta yi ta kumbura da tsage ko kadan, wanda ke haifar da blisters mai raɗaɗi, buɗaɗɗen raunuka, da ƙaiƙayi. Mutanen da ke da EB suna rayuwa a cikin kullun, ciwo mai raɗaɗi kuma suna buƙatar tallafin ku a yau.
Kuna iya zama bambanci ga mutanen da ke zaune tare da EB
Manufar 'BE bambancin roko na EB' shine tara £5m. Tare da wannan tallafin za mu:
- ba da ƙwararrun shawarwarin lafiyar hankali da albarkatu ga al'ummar EB.
- bayar da ƙarin tallafin kuɗi ga al'ummar EB, gami da ba da kuɗi 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 kula da lafiyar EB ɗin su.
- ba da damar shiga cikin ƙasa baki ɗaya zuwa DEBRA EB Community Support Team, gami da shirin na yanki na EB Connect abubuwan.
- hanzarta shirin mu na dawo da muggan ƙwayoyi yayin da muke neman tabbatar da ingantattun jiyya na magunguna ga kowane nau'in EB.
Tare da tallafin ku, za mu ci gaba da saka hannun jari a cikin magungunan sake dawo da gwaje-gwaje na asibiti waɗanda ke da mahimmanci don tabbatar da cewa a nan gaba akwai ingantaccen magani ga kowane nau'in EB.
Taimakon ku zai kuma ba mu damar samar da ingantaccen shiri na kulawar al'umma da tallafi na EB wanda ke da mahimmanci don haɓaka ingancin rayuwa ga mutanen da ke zaune tare da EB a yau.
Da fatan za a ba da gudummawa a yau. Kowane mataki yana ɗaukar mu mataki ɗaya kusa da duniyar da babu wanda ke fama da zafin EB.