Malingaliro a kampani DEBRA

Ntchito zofufuzira zisanu ndi ziwiri za DEBRA UK zomwe zidamalizidwa mu 2023

Zotsatira za ntchito zofufuzazi zitha kupititsa patsogolo moyo wa anthu omwe ali ndi EB Werengani zambiri

DEBRA UK amagwirizana ndi Cancer Research UK Scotland Institute kuti athane ndi khansa yoyambilira kwa odwala omwe ali ndi RDEB

DEBRA UK ndiwokonzeka kulengeza mgwirizano watsopano wazaka zambiri ndi bungwe lodziwika bwino la Cancer Research UK (CRUK) Scotland Institute, lomwe kale linali Beatson Institute, ku Glasgow, UK. Werengani zambiri

Chipatala chathu choyamba cha Application - kukonza kafukufuku pophatikiza anthu omwe akhudzidwa ndi EB

Mamembala opitilira khumi ndi awiri a DEBRA UK adalumikizana ndi ofufuza anayi mu Clinic yathu Yofunsira pa intaneti yoyamba. Werengani zambiri

Tsiku la Khansa Yapadziko Lonse

Tsiku la Cancer Padziko Lonse ili, tikuunikira ntchito zofufuza zomwe timapereka kuti timvetsetse zambiri za momwe khansa ikuyendera mu EB, komanso kufufuza mwayi wopititsa patsogolo mankhwala ochizira khansa yapakhungu. Werengani zambiri

DEBRA UK Research Round-up 2023

Chidule cha kafukufuku wathu wapano, ndalama zatsopano zofufuzira zomwe zidaperekedwa mu 2023 ndi mwayi wopeza ndalama zofufuzira za 2024. Werengani zambiri

DEBRA imakulitsa pulogalamu yofufuza popereka ndalama ma projekiti 14 atsopano ofufuza mu 2023

Ndife okondwa kulengeza kuti DEBRA UK idalandira pafupifupi ma fomu makumi atatu andalama zofufuza za epidermolysis bullosa (EB) mu 2023 chifukwa cha kuyimba kwathu koyamba kwa ofufuza ku UK ndi padziko lonse lapansi. Werengani zambiri

Lipoti latsopano likuwonetsa EB mu 10 yapamwamba ya kafukufuku wa matenda osowa

Bungwe la Medical Research Council ndi National Institute for Health and Care Research posachedwapa linasindikiza Lipoti la Project Rare Diseases Research Landscape. Werengani zambiri

Gelsuvez® gel osakaniza azipezeka kwa odwala pafupifupi miyezi itatu

Lero (Lachitatu pa Seputembara 20), Filsuvez®, gel osakaniza opangidwa ndi Amryt Pharma, adakwanitsa kuchita apilo. Werengani zambiri

Palibe chomwe chingalowe m'malo mwa kutayika kwa maso

Mu National Eye Health Week, tikuwunikira mapulojekiti omwe timapereka ndalama zomwe cholinga chake ndi kupereka mpumulo kuzizindikiro zamaso za EB. Werengani zambiri

DEBRA UK imayamba kuyesa kukonzanso mankhwala kuti achepetse matuza kwa odwala a EBS

DEBRA UK ndiyokonzeka kulengeza kuti yavomereza kuyesa kwachipatala koyamba komwe kwatheka ndi ndalama zomwe zaperekedwa kudzera pa A Life Free of Pain apilo. Werengani zambiri

Filsuvez® idavomerezedwa ngati chithandizo choyamba chamankhwala cha DEB ndi JEB ku UK

Ndife okondwa kumva kuti Filsuvez®, gel opangidwa ndi Amryt Pharma monga chithandizo cholimbikitsira kuchira kwa mabala akuda pang'ono tsopano wavomerezedwa kuti agwiritsidwe ntchito ku UK ndi National Institute for Health Care and Excellence (NICE). Werengani zambiri

Mapulojekiti asanu ndi atatu omwe adathandizidwa ndi DEBRA UK adamalizidwa mu 2022

Dziwani zambiri za ntchito zofufuza komanso momwe angasinthire moyo wa anthu omwe ali ndi EB. Werengani zambiri

VYJUVEK ™ idavomerezedwa kuti azichiza odwala a DEB azaka 6 + ku US

Ikapezeka, VYJUVEK ikhala njira yoyamba yochiritsira jini yochizira DEB. Werengani zambiri

DEBRA UK imagwirizana ndi Action Medical Research kuti athandizire kafukufuku wamankhwala othandiza a EBS a ana

DEBRA UK yasangalala kulengeza kuti yavomereza mgwirizano watsopano ndi AMRC kuti athandizire kafukufuku wawo kuti apeze mankhwala othandiza kwa ana omwe ali ndi epidermolysis bullosa simplex (EBS). Werengani zambiri

DEBRA SMT pitani ku Blizard Institute ku Queen Mary University ku London

Mamembala a gulu la oyang'anira akuluakulu a DEBRA adayendera Blizard Institute ku Queen Mary University of London kuti akamve za ntchito zofufuza za EB zomwe akugwira. Werengani zambiri

Ntchito zitatu zatsopano zofufuzira

Ndife okondwa kulengeza kuti tapereka ndalama kumapulojekiti atatu ochita kafukufuku atsopano. Werengani zambiri

Tsiku la Matenda Osowa 2023

#RareDiseaseDay, ndi tsiku loperekedwa kudziwitsa anthu ndi kubweretsa kusintha kwa anthu padziko lonse lapansi omwe ali ndi matenda osowa, mabanja awo ndi owasamalira. Werengani zambiri

DEBRA SMT adalandiridwa ku yunivesite ya Birmingham paulendo wofufuza

Lachinayi pa 5 Januware, Gulu lathu Loyang'anira Akuluakulu ndi matrasti adalandiridwa ku Yunivesite ya Birmingham ndi Sukulu ya Udokotala Wamano kuti awonere ntchito zofufuzira zothandizidwa ndi DEBRA zomwe zikuchitika kumeneko. Werengani zambiri

Opaleshoni Yatsopano Yamanja ndi Chithandizo Chamanja Clinical Practice Guideline (CPG)

Ndife okondwa kulengeza kuti "Dongosolo la Opaleshoni Yamanja ndi Kuchiritsa Pamanja kwa epidermolysis bullosa lasindikizidwa. Werengani zambiri

DEBRA tsopano ndi membala wa GlobalSkin ndi Genetic Alliance UK

DEBRA UK tsopano ndi membala wa mabungwe awiri ofunika omwe angatithandize kuti tidziwitse komanso kumvetsetsa za EB, GlobalSkin ndi Genetic Alliance UK. Werengani zambiri

Abeona Therapeutics amamaliza mayeso azachipatala a odwala awo opangidwa ndi cell therapy, EB-101

Chithandizo chinanso chotheka cha Recessive Dystrophic EB (RDEB) ndi gawo limodzi loyandikira nkhani zaposachedwa kuti Abeona Therapeutics amaliza kuyesa kwawo kwa odwala a cell therapy, EB-101. Werengani zambiri

Geli ya Filsuvez® yovomerezeka kuti igwiritsidwe ntchito ku Great Britain

Ndife okondwa kulengeza kuti Filsuvez®, gelisi yopangidwa ndi Amryt Pharma, yavomerezedwa ndi MHRA kuti igwiritsidwe ntchito ku Great Britain. 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.

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