ndife amene

Ogwira ntchito m'magulu a DEBRA's Research and Member Services pa Sabata la Members 2023. 

DEBRA UK idakhazikitsidwa mu 1978 ndi Phyllis Hilton, yemwe mwana wake wamkazi Debra anali epidermolysis bullosa (EB), monga bungwe loyamba padziko lonse lapansi lothandizira odwala kwa anthu omwe ali ndi EB.

Dziwani zambiri za mbiri ya DEBRA.

Masiku ano DEBRA UK ndi bungwe lothandizira kafukufuku wamankhwala ladziko lonse komanso bungwe lothandizira odwala kwa aliyense amene amakhala ku UK ali ndi mtundu uliwonse wa EB, achibale awo, osamalira, kuphatikizapo akatswiri azachipatala ndi ofufuza omwe ali ndi EB.

Chaka chilichonse DEBRA UK imathandizira mamembala 3,800+ ndipo imagwiritsa ntchito antchito opitilira 370 ndi odzipereka opitilira 1,000+ omwe amathandizira gulu lachifundo pamashopu achifundo 90+ omwe amapezeka ku England ndi Scotland. Mu 2023, odzipereka adapereka maola opitilira 211,000 anthawi yawo kwaulere, kupulumutsa ndalama zokwana £2.2 miliyoni.

DEBRA UK ndiyenso wopereka ndalama zambiri ku UK pa kafukufuku wa EB ndipo kuyambira 1978 wawononga ndalama zokwana £22m pa kafukufuku wa EB ndipo wakhala ndi udindo, kudzera mukupereka ndalama zofufuza ndikugwira ntchito padziko lonse lapansi, pakukhazikitsa zambiri zomwe tsopano zikudziwika za EB.

 
Zimene timachita

DEBRA UK ilipo kuti ipereke chisamaliro ndi chithandizo kuti mukhale ndi moyo wabwino kwa anthu omwe ali ndi EB, ndi ndalama kafukufuku wochita upainiya kupeza machiritso ogwira mtima, komanso machiritso a EB.

Masomphenya athu ndi a dziko limene palibe amene akuvutika ndi EB, ndipo sitidzasiya mpaka masomphenyawa akwaniritsidwa.

Kuchokera pakupeza majini oyamba a EB mpaka kupereka ndalama zoyeserera zoyesa zamankhwala mu gene therapy, tasewera a gawo lofunikira mu Kafukufuku wa EB padziko lonse lapansi ndipo akhala ndi udindo wopititsa patsogolo matenda, chithandizo, komanso kasamalidwe ka tsiku ndi tsiku kwa EB.

Tadzipereka kuwonetsetsa kuti anthu pafupifupi 5,000+ omwe amakhala ndi EB ku UK ndi mabanja awo ndi owasamalira akupeza chithandizo chofunikira komanso chachikulu chomwe amafunikira.

Ndalama zomwe timapeza kuchokera ku zathu ntchito zopezera ndalama ndi network yathu ya malo ogulitsa zachifundo, imatithandiza kupereka chisamaliro ndi chithandizo kuti tipititse patsogolo moyo wa anthu omwe ali ndi EB lerolino, ndikupereka ndalama zofufuza kafukufuku kuti tipeze mankhwala ndi machiritso.

Dziwani zambiri za momwe timapezera komanso kugwiritsa ntchito ndalama.

Katswiri wazachipatala

Timathandizira akatswiri azaumoyo pogwira ntchito ndi 4 national EB centers ndi oposa 60 EB ogwira ntchito zaumoyo kuphatikizapo anamwino apadera a EB kuti atsimikizire kuti mamembala athu akugwirizana ndi ntchito zomwe akufunikira kuti akhale ndi moyo wabwino.

 
Chithandizo chamagulu

Kudzera mwa ife Gulu Lothandizira Anthu timapereka chithandizo chamitundumitundu kwa gulu la EB kuphatikiza zambiri za EB kuphatikiza chithandizo pazovuta zilizonse zomwe zimakhudza moyo watsiku ndi tsiku kuphatikiza mapindu ndi thandizo, malangizo kwa olemba ntchito ndi masukulu, nyumba, chithandizo chamaganizo ndi zina zambiri.

Fufuzani kuti mupeze chithandizo

Timayika ndalama pa kafukufuku wosintha moyo ndipo pakali pano tikupereka ndalama zofufuza 19 ndi cholinga chofuna kupeza chithandizo chochepetsera kwambiri zizindikiro zowononga ndi zowawa za EB pamene tikuyesetsa kupeza chithandizo.

Dziwani zambiri za pulogalamu yathu yofufuza.