Anthu athu

Sitingathe kuletsa ululu wa EB patokha ndipo kotero ndife othokoza kwambiri kudalira thandizo la mfumu yathu, pulezidenti wathu, wotsatila pulezidenti, ndi akazembe omwe amatithandiza kudziwitsa anthu za EB, ndi DEBRA, ndi ntchito yomwe timachita. Tilinso othokoza kwambiri kuti titha kudalira thandizo la mlangizi wathu wodziyimira pawokha, yemwe amathandizira pulogalamu yathu yofufuza, ndi Board of Trustees, omwe amadzipereka modzifunira kuyang'anira kasamalidwe ndi kayendetsedwe ka bungwe lothandizira kuwonetsetsa kuti likukhazikikabe. pa zosowa za mamembala ake ndi gulu lonse la EB.

Dziwani zambiri za #TeamDEBRA pansipa.

Mthandizi wathu

HRH The Duchess of Edinburgh - "Ndikumva kuti moyo wanga walemeretsedwa ndi zokumana nazo zomwe ndakhala nazo kuyambira pomwe ndinakhala Patron wa DEBRA ..." Werengani zambiri

Purezidenti wathu

Mu udindo waulemu wa Purezidenti wa DEBRA, Simon Weston CBE, adzadziwitsa anthu za EB ndi DEBRA komanso kuthandizira kusonkhanitsa ndalama kuti apereke chisamaliro ndi chithandizo kwa EB Community ndikuthandizira kafukufuku wamankhwala ogwira mtima ndi machiritso. Werengani zambiri

Wachiwiri kwa purezidenti wathu

Wachiwiri kwa purezidenti wathu, Graeme Souness CBE, Frank Warren, Stuart Procter ndi Lenore England. Werengani zambiri

Akazembe athu

Akazembe a DEBRA amachokera kumadera osiyanasiyana, kuphatikizapo anthu omwe akukhala nawo kapena omwe akhudzidwa mwachindunji ndi EB, ndi anthu omwe ali ndi mbiri yapagulu ndi nsanja zomwe ali okonzeka kugwiritsa ntchito pothandizira zachifundo. Werengani zambiri

Mlangizi wathu

Tili ndi mwayi wokhala ndi chithandizo cha alangizi angapo odziimira okha omwe ali ndi chidziwitso chochuluka, kuti atithandize pa ntchito yathu yoletsa ululu kwa anthu okhala ndi EB. Werengani zambiri

Bungwe lathu la trustee

Bungwe Lathu la Matrasti limapangidwa ndi anthu ambiri omwe amakumana ndi EB, omwe ali ndi EB eni kapena ali ndi achibale apamtima omwe ali ndi EB, komanso omwe ali ndi luso komanso chidziwitso chomwe chingawonjezere phindu ku utsogoleri ndi utsogoleri. pa DEBRA. Werengani zambiri

Gulu lathu la utsogoleri wamkulu

Gulu lathu la utsogoleri wamkulu likuyesetsa kukwaniritsa cholinga chathu chokweza moyo wa anthu omwe ali ndi EB komanso kufunafuna kwathu 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.

Tag mtambo

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