Pitani ku DEBRA

Timayika mawu a mamembala athu pamtima pa chilichonse chomwe timachita ku DEBRA. Chifukwa chake ngati mukufuna kugwiritsa ntchito zomwe mwakumana nazo kuti mupange tsogolo la ntchito zathu za EB, sankhani kafukufuku womwe titi tithandizire nawo kapena kukonza zochitika zathu, pali zambiri zoti muchite. Aliyense amene amatenga nawo mbali amapanga kusiyana kwakukulu kwa ife ndi anthu onse ammudzi.

Ngati ndinu membala mutha kulembetsa ku netiweki yathu kuti mulandire maimelo okhudza mwayi watsopano akabwera.

Lowani ku netiweki yathu yokhudzidwa

James Lind Alliance

Kodi ndi zinthu ziti zofunika kwambiri zomwe kafukufuku wa EB ayenera kuyang'anamo? Tiuzeni mu polojekitiyi yoyika patsogolo kafukufuku wa JLA. Werengani zambiri

Kupititsa patsogolo chithandizo cha EB

Dziwani momwe mungagwiritsire ntchito zomwe mwakumana nazo pa EB kuti muthandizire kuthandizira gulu la EB. Werengani zambiri

Maphunziro a EB

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

Khalani membala

Ngati inu kapena wachibale mukukhala ndi EB, ndinu wosamalira kapena wina amene amagwira ntchito ndi anthu omwe akhudzidwa ndi EB, ndiye kuti mutha kukhala membala wa DEBRA. Dziwani momwe mungachitire. Werengani zambiri

Kuchita nawo kafukufuku

Kaya ikukuthandizani kusankha ndalama zomwe mudzapeze pofufuza, kapena kujowina gulu la odwala pantchito yatsopano yofufuza, mutha kugwiritsa ntchito zomwe mwakumana nazo kuti mutithandize pamene tikufufuza zamankhwala ndi machiritso. Werengani zambiri

Latest

Lembetsani ku maimelo a umembala wa DEBRA

Lowani kuti mulandire zosintha kuchokera ku DEBRA za umembala wanu.
Othandizira a DEBRA UK, Paul Glover ndi Martyn Rowley, akweza £ 115,000 kwa mabanja omwe akukhala ndi EB

Lachiwiri pa Seputembara 3, othandizira odzipereka a DEBRA UK Paul Glover ndi Martyn Rowley adalandiridwa ku ofesi yayikulu ya DEBRA UK kukondwerera kupambana kwawo kwakukulu kokweza £115,000 mu 2024 kuthandiza omwe akukhala ndi EB.
DEBRA UK Challenge 2024

Seputembala uno, chonde thandizirani Graeme Souness pazovuta zake za 'BE the difference for EB'.
Graeme Souness CBE ndi Isla Grist akumana ndi banja la Barnaby Webber pa BBC Breakfast

Pa 21 Ogasiti 2024, Wachiwiri kwa Purezidenti wa DEBRA Graeme Souness CBE ndi Isla Grist, omwe amakhala ndi recessive dystrophic EB (RDEB), adawonekeranso pa BBC Breakfast.

Ambiri amawerenga

Pezani malo ogulitsa

Pezani sitolo yanu yapafupi ya DEBRA ndikuthandizira kulimbana ndi EB. Masitolo athu amagulitsa zovala zotsika mtengo komanso zapamwamba zomwe timakonda kale, mipando, zinthu zamagetsi, mabuku, zida zakunyumba ndi zina zambiri.
Kusonkhanitsa mipando

Perekani mipando yanu yosafunikira, zinthu zapanyumba ndi zamagetsi pogwiritsa ntchito ntchito yathu yaulere yotolera mipando. Pokhala ndi njira zotetezera, kupereka zinthu zanu sikungakhale kosavuta.
Zinthu zomwe sitigulitsa

Dziwani kuti ndi miyezo yaumoyo ndi chitetezo ndi zilembo zomwe tikufuna komanso zomwe sitingathe kugulitsa.
EB ndi chiyani?

Epidermolysis bullosa (EB) ndi matenda opweteka omwe amatuluka pakhungu popanda mankhwala. Dziwani za mitundu yosiyanasiyana ya EB, zomwe zimayambitsa, zizindikiro ndi mankhwala.
Graeme Souness akusambira English Channel kuti akweze £1.1m kuti athetse ululu wa EB

Graeme Souness, wosewera mpira wakale wapadziko lonse lapansi, manejala, komanso pundit, akusambira English Channel mwezi uno kuti akweze ndalama zokwana £1.1m kuti aletse kuwawa kwa epidermolysis bullosa (EB).
Lumikizanani nafe
Perekani zinthu

Perekani zinthu zanu zomwe munazikonda kale, kuphatikiza zovala, mipando ndi zida zapanyumba kuti zisatayidwe komanso kutithandiza kupeza ndalama zofunika kudzera m'masitolo athu. Dziwani zambiri za momwe mungaperekere zinthu lero.
Tizigwira nafe

DEBRA ikhoza kupitiriza ntchito yake yofunika ndi chithandizo ndi chilimbikitso cha anthu ammudzi komanso ndi khama la antchito ake ndi odzipereka.
Khalani membala

Ngati inu kapena wachibale mukukhala ndi EB, ndinu wosamalira kapena wina amene amagwira ntchito ndi anthu omwe akhudzidwa ndi EB, ndiye kuti mutha kukhala membala wa DEBRA. Dziwani momwe mungachitire.
Nkhani ya Isla

Ndife banja labwinobwino. Ana athu, Isla ndi Emily, amapita kusukulu, amakhala ndi anzawo ndipo amakonda kusewera pa trampoline. Koma m'modzi mwa ana anu akakhala ndi EB, muyenera kutanthauziranso bwino.