PAnthu omwe ali ndi chidziwitso cha EB ndi ofunika kwambiri kutithandiza kusankha zomwe timapereka. Kutengapo gawo kwawonso kulimbitsas kafukufuku amene akuchitika. Izi zikhoza kukhala kupereka mayankho pa kafukufuku mapulogalamu othandizira kusankha ntchito zomwe timapereka kapena kutenga nawo mbali mu kafukufuku wokha. Dinani pamapulojekiti osiyanasiyana omwe ali pansipa kuti muwone zomwe akunena komanso momwe mungatengere nawo gawo.
Simufunikanso kukhala ndi mbiri ya sayansi kuti mutenge nawo mbali. Tikufuna kuti anthu osiyanasiyana ochokera m'dziko lonselo omwe ali ndi zochitika zamitundu yosiyanasiyana ya EB atenge nawo mbali, kuti zisankho zathu ziyimire anthu ambiri m'dera la EB momwe tingathere. Ma projekiti angaperekenso mwayi wokhala pamodzi ndi mamembala ena omwe ali ndi chidwi ndi kafukufuku wa EB.
Ofufuza amafunsira ndalama ku DEBRA kuti achite kafukufuku wawo mu EB. Tithandizeni kusankha kuti ndi iti mwa mapulogalamuwa omwe tikuyenera kulipira. Werengani zambiri
Lowani nawo zipatala zathu zomwe mamembala a DEBRA ndi ofufuza a EB amakambirana za kafukufuku yemwe akukonzekera. Werengani zambiri
Zogulitsa za Codesign za gulu la EB. Werengani zambiri
Monga bungwe lothandizira odwala, nthawi zambiri timafunsidwa kuti tifotokoze tanthauzo la kukhala ndi EB. Siyani umboni wanu kuti udziwitse ntchitoyi. Werengani zambiri
Kodi ndi zinthu ziti zofunika kwambiri zomwe kafukufuku wa EB ayenera kuyang'anamo? Tiuzeni mu polojekitiyi yoyika patsogolo kafukufuku wa JLA. Werengani zambiri
Mwayi wotenga nawo mbali pazofufuza komanso PPIE yophatikiza zofufuza, mafunso ndi zokambirana zikugawidwa pano. Werengani zambiri
Mamembala a DEBRA atha kutenga nawo mbali pamayesero azachipatala polankhula ndi dokotala wawo wodziwa za mayeso omwe akuyenera kukhala nawo. Tigawananso mndandanda wa mwayi pano. Werengani zambiri
Thandizani ofufuza a pa yunivesite ya Cardiff kupanga 'chida chothandizira' kuti athandizire umoyo wamaganizo wa makolo omwe akusamalira mwana yemwe ali ndi EB Werengani zambiri
Mayesero azachipatala sangakhale oyenera kwa aliyense ndipo angaphatikizidwe kudzera mwa dokotala wanu waluso. Werengani zambiri
Phunziro lathu lodziwika bwino kuti mumvetsetse zomwe kukhala ndi EB kumatanthauza kwa inu. Kafukufukuyu akonza zonse zomwe timachita ku DEBRA ndikuchita gawo lofunikira pokopa thandizo la EB ndi ndalama. Werengani zambiri
Phunzirani zambiri za kafukufuku wa EB ndi mapulojekiti apano omwe tikupereka ndalama. Werengani zambiri
Mayesero azachipatala amapereka umboni wa njira zabwino zomvetsetsa ndi kuchiza zizindikiro za EB. Werengani zambiri
Kudziwa zambiri za sayansi ya kafukufuku wa EB kungathandize kumvetsetsa kafukufuku yemwe timapereka ndalama komanso momwe zingakhudzire mamembala a DEBRA UK. Werengani zambiri