Zipatala zofunsira DEBRA
Chaka chilichonse, ofufuza a EB ochokera padziko lonse lapansi amafunsira ku DEBRA kuti apeze ndalama zothandizira ntchito zawo zofufuza. Akatswiri amitundu yosiyanasiyana amagwira nafe ntchito kuwonetsetsa kuti timapereka ndalama zofufuzira zomwe zimapindulitsa kwambiri gulu la EB. Akatswiriwa akuphatikiza mamembala athu a DEBRA monga akatswiri mwazomwe adakumana nazo.
Kufufuza kumakhala bwino pamene ntchito zapangidwa mogwirizana ndi anthu omwe angapindule mwachindunji ndi zotsatira zake. Apa ndipamene zipatala zathu zofunsira zimabwera.
Tinachita chipatala chathu chachitatu cha Application mu February 2026, komwe tinagwirizana ndi ofufuza atatu ndi mamembala 19. Zambiri zokhudza zotsatira za gawoli ndi momwe linayendera posachedwa.
Mamembala onse akhoza kulembetsa kuti akhale mbali ya DEBRA's Involvement Network kuti amve kaye za mwayi umenewu.
Kuti muwone kafukufuku amene tikulipira panopa, pitani patsamba lathu la kafukufuku.
Ndi misonkhano yapaintaneti yomwe imasonkhanitsa mamembala a DEBRA ndi ofufuza a EB asanapemphe ndalama, kuti akambirane malingaliro ofufuza ndikuwaumba pamodzi.
Kwa mamembala, uwu ndi mwayi woti muyandikire ku kafukufuku wa EB panjira, kuti muyike mafunso anu okhudza kafukufukuyo kwa ochita kafukufukuwo ndikuthandizira kukonza mapulojekiti awo.
Kwa ofufuza, ndi mwayi waukulu wapagulu/odwala (PPI) pomwe mukukonzekeretsa zomwe mukufuna kuti mupereke. Mutha kukayikira omwe akhudzidwa mwachindunji ndi EB za zinthu zina za kafukufuku wanu ndikupeza mayankho owerengeka a magawo a 'abstract' ndi 'value to EB' amalingaliro anu omwe adzawunikenso ndi mamembala athu.
Mamembala ndi ofufuza amalembetsa pasadakhale kuti apite ku chipatala cha DEBRA. Tidzapempha ochita kafukufuku kuti apereke ndondomeko ya "abstract" yawo, kufotokozera mwachidule ntchito yawo yofufuza yolembedwa m'mawu osagwirizana ndi sayansi, pamaso pa chipatala kuti mamembala awerenge. Tiziyika ngati zachinsinsi ndikugawana ndi mamembala okhawo omwe amapita ku chipatala.
Pachipatala chofunsira, wofufuza aliyense azikhala ndi mphindi 20 ndi mamembala kuti afunse mayankho pa zomwe akuganiza kapena zina zomwe akufuna. Mamembala atha kufunsa ofufuza za malingaliro awo ndikugawana zomwe adakumana nazo pa EB.
Kuti mudziwe zambiri, werengani nkhani zathu zokhudza chipatala chofunsira ntchito cha 2025 ndi chipatala chathu choyamba chofunsira ntchito mu 2024 kuphatikizapo ndemanga kuchokera kwa mamembala ndi ofufuza omwe adapezekapo.
DEBRA idzayendetsa msonkhano ndikutsimikizira zomwe zidzachitike mamembala ndi ofufuza akalembetsa. Tithandiza ofufuza ndi mamembala onse kuti apindule ndi gawoli pogawana zambiri ndi kulongosola zolinga za ofufuza aliyense pagawoli.
Chipatala chathu chotsatira cha Application chidzachitika kumayambiriro kwa chaka cha 2027.
Tonse ndife ogwirizana m'masomphenya athu a dziko lomwe palibe amene akuvutika ndi EB. Kuti izi zitheke, kufufuza kwa EB kuyenera kugwirizana ndi zosowa za gulu la EB pophatikiza anthu omwe ali ndi chidziwitso chamoyo pa kafukufuku kuyambira pa gawo la mapangidwe kupita patsogolo.
Njira yovomerezera thandizo la DEBRA imafunsa ofufuza kuti awonetse momwe adaphatikizira PPI pamapangidwe awo. Mamembala athu amawunika ndikulemba malingaliro onse a grant Board of Trustees asanapange chisankho chomaliza chandalama. Kotero zikhoza kulipira kuti muthe kufotokozera momveka bwino kwa omvera omwe si asayansi zomwe polojekiti yanu ili, ndi momwe idzawonjezerere phindu ku gulu la EB.
Wofufuza wa EB ndi sing'anga, Dr Su Lwin, adagwira ntchito ndi DEBRA pothandizira PPI pakupanga kafukufuku wake, ndipo anati:
'Chondichitikira choyamba chogwira ntchito ndi gulu la odwala la DEBRA chakhala chabwino komanso chothandiza. Ndimagwira ntchito yopanga maphunziro omwe nthawi zina amaphatikiza njira zowononga anthu omwe amakhala ndi EB. Pokambirana za izi ndi anthu omwe adakumanapo ndi EB, ndinatha kumvetsetsa kuti ndi zigawo ziti za kafukufuku zomwe zinali zofunikira kapena ayi; ndi mitundu yanji ndi njira zingati zomwe zinali zovomerezeka kwa iwo. Izi zinali zofunika kwambiri pothandizira kukonza momwe ndingagwiritsire ntchito ndalama zaposachedwa kwambiri pantchitoyi - Art-EB - ya Medical Research Council Clinician Scientist Fsoci. Ndine woyamikira kwambiri kwa DEBRA UK kuthandizira kukonza misonkhano ya odwala a EB, ndi gulu lothandizira kukonza ntchito yanga.' – Dr Su Lwin