Hla mus rau cov ntsiab lus

YOG qhov txawv rau EB

Banner featuring tus neeg mob hluas thiab tus kws tshawb fawb mob siab rau nrog nws lub tshuab tsom. Koj qhov kev pab cuam tiag tiag tso cai rau koj "Ua qhov sib txawv rau EB." Pub dawb hnub no.

 

2023 yog lub xyoo tseem ceeb rau cov zej zog epidermolysis bullosa (EB). Qhov kev thov rov hais dua 'Lub Neej Tsis Muaj Mob', uas ntau ntawm koj tau ua siab zoo txhawb nqa thiab suav nrog DEBRA Tus Lwm Thawj Coj, Graeme Souness, ua luam dej hauv Askiv Channel, coj EB rau cov pej xeem nyiam, thiab xa cov nyiaj xav tau ntau uas tau qhib thawj EB. tshuaj repurposing soj ntsuam mus sib hais yuav commissioned.

Tseem muaj ntau yam ua, txawm tias…

EB yog ib qho tsis tshua muaj, cov kab mob ntawm cov tawv nqaij hlwv uas ua rau daim tawv nqaij hlwv thiab tsim kua muag ntawm qhov me ntsis kov, ua rau mob hlwv heev, qhib qhov txhab, thiab khaus khaus. Cov neeg uas muaj EB nyob tas li, ua rau mob hnyav thiab xav tau koj txoj kev txhawb nqa niaj hnub no.

Koj tuaj yeem yog qhov txawv rau cov neeg nyob nrog EB

Lub hom phiaj ntawm 'BE qhov sib txawv rau EB' thov kom nce £ 5m. Nrog rau cov nyiaj no peb yuav:

  • muab kev cob qhia tshwj xeeb rau kev puas siab puas ntsws thiab kev pab cuam rau EB zej zog.
  • muab nyiaj pab ntau dua rau EB zej zog, suav nrog nyiaj txiag rau cov khoom tshwj xeeb los txo cov tsos mob ntawm EB, thiab nyiaj pab thiab / lossis kos npe rau kev txhawb nqa nyiaj txiag muaj los xyuas kom txhua tus tswvcuab tuaj yeem tuaj koom lawv cov sijhawm teem sijhawm kho mob EB tseem ceeb.
  • muab kev nkag mus rau thoob tebchaws rau DEBRA EB Pab Pawg Pabcuam Hauv Zej Zog, suav nrog kev pabcuam hauv cheeb tsam EB Txuas cov xwm txheej.
  • ua kom peb cov kev pab cuam rov qab siv tshuaj thaum peb nrhiav kev ruaj ntseg kho tshuaj zoo rau txhua hom EB. 

Nrog rau koj qhov kev txhawb nqa, peb tseem yuav nqis peev ntxiv rau hauv cov tshuaj rov ua dua kev sim tshuaj ntsuam xyuas uas tseem ceeb heev kom ntseeg tau tias yav tom ntej muaj kev kho tshuaj zoo rau txhua hom EB.

Koj qhov kev txhawb nqa tseem yuav pab kom peb muab cov kev pab cuam txhim kho ntawm EB kev saib xyuas hauv zej zog thiab kev txhawb nqa uas yog qhov tseem ceeb los txhim kho lub neej zoo rau cov neeg nyob nrog EB niaj hnub no.

Thov pub dawb hnub no. Txhua qhov kev txiav txim coj peb ib kauj ruam los ze zog rau lub ntiaj teb uas tsis muaj leej twg raug kev txom nyem los ntawm EB.

NCO HNUB NO