Lub website no siv cov ncuav qab zib kom peb thiaj li muab tau rau koj nrog tus neeg siv tau zoo tshaj plaws. Cov lus qhia hauv qab zib yog cia rau hauv koj tus browser thiab ua haujlwm xws li lees paub koj thaum koj rov qab mus rau peb lub vev xaib thiab pab peb pawg neeg kom nkag siab txog cov chaw hauv lub website koj pom ntau yam ntxim nyiam thiab siv tau.
Kev koom tes koom tes
Kev sib koom tes hauv tuam txhab ua lub luag haujlwm tseem ceeb hauv kev taug kev mus #StopThePain ntawm EB. Kev koom tes nrog kev koom tes nrog DEBRA tuaj yeem ua tau zoo thiab hloov pauv rau koj lub tuam txhab thiab DEBRA, koom nrog koj cov neeg ua haujlwm thiab pab koj lub tuam txhab ua tiav koj cov hom phiaj ESG.
Nrog koj kev txhawb nqa peb tuaj yeem ua rau hnub no zoo dua rau cov neeg nyob nrog txhua hom EB thiab muab kev cia siab tiag tiag rau ib qho yav tom ntej tsis muaj mob.
Peb BE qhov sib txawv rau EB thov kom nce £ 5m los muab kev saib xyuas EB thiab kev txhawb nqa zoo rau hnub no, Thiab Kev kho tshuaj zoo rau txhua hom EB rau tag kis. Nrog rau cov nyiaj no peb npaj rau:
- kev tshwj xeeb kev pab tswv yim txog kev puas hlwb thiab cov peev txheej rau EB zej zog.
- kev nyiaj pab ntau tshaj rau EB zej zog suav nrog nyiaj txiag rau cov khoom lag luam tshwj xeeb txhawm rau txo cov tsos mob EB, thiab nyiaj pab thiab / lossis kos npe rau kev txhawb nqa nyiaj txiag muaj los xyuas kom txhua tus tswv cuab tuaj yeem tuaj koom lawv cov kev teem caij kho mob EB tseem ceeb.
- kev Kev nkag mus thoob tebchaws rau DEBRA UK EB pab pawg txhawb nqa zej zog suav nrog ib qho kev pab cuam ntawm cheeb tsam EB Txuas cov xwm txheej.
- ntxiv mus ceev peb cov tshuaj repurposing program raws li peb nrhiav kom tau txais kev kho mob zoo rau txhua hom EB.
Download tau peb daim ntawv qhia txog kev sib koom tes
Los yog thov hu rau Ann Avarne, Corporate Partnerships Manager, yog xav paub ntxiv.
"Qhov phem tshaj plaws ntawm EB yog qhov mob. Qhov mob yog qhov tsis txaus ntseeg, nws yog qhov mob txhua hnub uas tsis ploj mus. Ces muaj qhov khaus. Qee hnub tsis muaj khaus thiab qee zaum kuv muaj hnub uas kuv tsis tuaj yeem nres khaus. Cov caws pliav ntawm kuv daim tawv nqaij, qhov sib xyaw ntawm kuv cov ntiv tes, thiab qhov depletion ntawm kuv cov tawv nqaij yuav tsuas nce ntxiv thaum kuv loj tuaj uas yuav ua rau kuv lub neej nyuaj dua. Qhov no yog vim li cas kuv xav tau kev kho tshuaj zoo thiab thaum kawg kho rau EB. "
Fazeel Irfan, 17
Ua neej nyob nrog dystrophic epidermolysis bullosa (RDEB)
Koj lub tuam txhab tuaj yeem ua ib feem thiab ua qhov txawv rau EB
Kev muab cov neeg koom tes feem ntau yuav ua rau pom qhov sib txawv ntawm qhov sib txawv los ntawm kev muab cov nyiaj tseem ceeb rau plaub qhov chaw uas tseem ceeb rau cov neeg nyob nrog EB.
Pioneering kev tshawb fawb suav nrog kev nqis peev hauv kev siv tshuaj rov ua dua tshiab uas lub hom phiaj kom muaj txiaj ntsig zoo rau kev kho tshuaj rau txhua hom EB.
Kev saib xyuas thiab kev txhawb nqa los txhim kho lub neej zoo rau cov tib neeg thiab tsev neeg nyob nrog EB.
Los ntawm cov tswv cuab nkag mus rau cov nyiaj pab ntau DEBRA UK cov tsev so nyob thoob plaws UK.
DEBRA UK ua haujlwm koom tes nrog NHS los muab kev pabcuam EB kho mob zoo dua.
Vim li cas tam sim no?
"Peb nyob hauv ib lub sijhawm ntawm kev tshawb fawb thiab kev kho mob loj heev, uas tau tsim lub sijhawm tiag tiag rau kev ua tiav hauv EB tshawb fawb txog kev kho mob yav tom ntej, tab sis cov kev kho mob no xav tau tam sim no; Cov neeg mob nyob nrog EB tsis tuaj yeem tos, lawv xav tau kev tswj xyuas cov tsos mob zoo, kev ua neej zoo dua, thiab kev cia siab tiag tiag tias yuav pom kev kho sai sai. Nrog koj kev pab peb tuaj yeem ua kom nrawm nrawm thiab dav ntawm peb txoj kev tshawb fawb txog kev kho mob thiab ua ke peb tuaj yeem ua tiav txoj kev xav tau thiab tseem ceeb no los hloov lub neej thiab xaus kev txom nyem. "
Tony Byrne, CEO DEBRA UK