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Zochitika za membala wa DEBRA UK

Chikondwerero cha Sabata la Mamembala a DEBRA UK chiri chodzaza ndi anthu atakhala mozungulira matebulo, okongoletsedwa ndi nsalu za tebulo za buluu ndi zoyera ndi zakumwa zosiyanasiyana, pansi pa kuyatsa kocheperako, kumapangitsa kuti m'nyumba mukhale mpweya wabwino. Gulu lalikulu la anthu, omwe amapita ku chimodzi mwazochitika za membala wa DEBRA UK, atakhala pamatebulo ozungulira muholo yaphwando yokhala ndi kuwala kofiirira, akukambirana komanso kudya.

Timadziwa kuti ndi kofunika bwanji kuti mamembala a gulu la EB athe kulumikizana wina ndi mzake, kugawana zochitika ndi malangizo, kupanga mabwenzi, ndi kusangalala, zonse popanda kufotokoza zomwe EB ndi.

Ichi ndichifukwa chake tapanga pulogalamu ya zochitika zapadziko lonse, madera komanso pa intaneti kuti gulu la EB lizitha kulumikizana kwanuko ndikupanga kulumikizana kofunikira ndi mamembala amadera ena adziko.

Zochitika zathu zimaperekanso mwayi kwa mamembala kuti azilumikizana ndi DEBRA EB Community Support Team ndikumva kuchokera kwa akatswiri pazaumoyo wa EB.

Kupatula zochitika zathu makamaka kwa mamembala, nthawi zina timalandiranso chiwerengero chochepa cha matikiti aulere kuti mamembala akakhale nawo pazochitika zina zazikulu zopezera ndalama za DEBRA.

Onani mndandanda wathu wonse wa zochitika za mamembala

Pezani chochitika

Nthawi zonse timakonzekera zochitika zathu malinga ndi zomwe mamembala athu akufuna ndi zosowa. Chifukwa chake, ngati pali china chake chomwe mungafune kuwona mochulukirapo kapena mochepera, kapena ngati muli ndi lingaliro la chochitika chatsopano, tikufuna kumva malingaliro anu polemba fomu iyi. 

Zochitika zapa-munthu za mamembala a DEBRA UK

Mamembala athu amakhala konsekonse ku UK. Monga ambiri simutero khalani pafupi wina ndi mzake komanso zochitika zing'onozing'ono zam'deralo sizili nthawi zonse zothandiza, timakhala ndi zochitika zosiyanasiyana zachigawo kuti tigwirizane ndi mamembala onse chaka, kuwonjezera pa zathu Sabata ya Mamembala chochitika cha dziko lonse.
Zochitika zikuphatikiza sabata yodziyimira pawokha makamaka kwa mamembala azaka 18+ ku London, ndi zomwe zidakhazikitsidwa posachedwa. Zolumikizana Zam'deralo.
Tilinso ndi cholinga cholumikizana ndi mamembala athu pazochitika zina za chipani chachitatu ndi ziwonetsero monga Naidex, chochitika chotsogola ku UK chopatsa mphamvu ndikuthandizira olumala.
Anthu anayi amakhala panja pamwambo wa membala wa DEBRA UK; pakatikati pali mzimayi woyenda pa njinga ya olumala, ndipo amuna atatu atayima momuzungulira, onse akumwetulira kamera.

Sabata ya Mamembala a DEBRA

Weekend ya Members ndi chochitika chathu chadziko lonse, ndipo imathandizira mamembala kulumikizana ndi anthu ena okhala ndi mitundu yonse ya EB. Zimapereka mwayi wogawana ndi kuphunzira kuchokera kwa wina ndi mzake, kusangalala, ndikulumikizana pamalo otetezeka omwe amakwaniritsa zosowa za anthu okhala ndi EB.
Dziwani zambiri
Azimayi awiri akhala patebulo lakudyera, akumwetulira komanso akukambirana za zakumwa pa imodzi mwazochitika za Local Connect za DEBRA.

Zolumikizana Zam'deralo

Zochitika za Local Connect ndizosakhazikika, zotsikira mwa munthu zomwe zimayendetsedwa ndi DEBRA's EB Community Support Team, zokonzedwa kuti zibweretse anthu okhala ndi EB pamodzi. Izi zikuchitika ku UK konse.
Dziwani zambiri
Ndege, basi yaku London, ndi njinga zamoto zapamwamba ndi magalimoto omwe akuwonetsedwa panja ku Brooklands Museum.

Members Connect: Brooklands Museum

Lowani nafe ku Brooklands Museum kuti musangalale, momasuka masana kuti mukumane ndi mamembala ena agulu la EB. Mudzasangalalanso ndi zomwe nyumba yosungiramo zinthu zakale zochititsa chidwiyi ili ndi - fufuzani magalimoto akale, magalimoto othamanga, ndege zodziwika bwino, komanso mbiri ya njanji yoyamba yopangira zolinga padziko lapansi.
Dziwani zambiri

Zochitika pa intaneti za mamembala a DEBRA UK

Zochitika izi Perekani mwayi ku lmverani ena, ku gawo malangizo ndi zochitika, ndi ku kambiranani za malingaliro omwe ali ndi mitu yambiri Zogwirizana ndi EB. Chofunika kwambiri, iwonso Perekani mwayi ku kudziwa ena mamembala a EB ammudzi m'malo omasuka, osakhazikika.
Banja likukhala pa sofa, akumwetulira, atanyamula mwana. Mkaziyo amavala sweti yamizeremizere, mwamunayo amavala malaya a beige ndi kapu, ndipo mwanayo amavala choyera.

Mamembala Pitstops

Zochitika zaulere zapaintaneti izi zimalola mamembala onse, makolo ndi olera komanso omwe amakhala ndi EB, kulumikizana kudzera pa Zoom ndikugawana zomwe zachitika komanso malingaliro okhudza mitu yokhudzana ndi anthu okhala ndi mitundu yonse ya EB.
Dziwani zambiri
Mayi wovala mahedifoni amakhala pa desiki, akumwetulira ndikuyang'ana pa laputopu yake pa intaneti.

Ma webinars a Zaumoyo ndi Zaumoyo

Ma webinars athu a Zaumoyo ndi Zaumoyo ndizochitika zaulere pa intaneti. Amapereka mwayi kwa mamembala onse kulumikizana ndi ena ndikuphunzira za mitu yomwe ili yofunika ku gulu la EB.
Dziwani zambiri
David Williams wochokera ku DEBRA EB Community Support Team, akuchititsa msonkhano wamagulu aamuna pa Members 'Weekend 2024.

Gulu la Amuna la DEBRA

Msonkhano wapagulu wamwezi uliwonse wapaintaneti ndi wa mamembala achimuna azaka zapakati pa 18+ ndipo ndi malo abwino kugawana, kumvetsera, ndi kungolankhula ndi amuna ena omwe angakumane ndi zomwezo.
Dziwani zambiri
Dr Carina Graham wovala labu ndi magolovesi amakhala pa chopondapo mu labotale, akumwetulira. Yoyikidwa kutsogolo kwa laminar flow hood yodzazidwa ndi zida zosiyanasiyana za labu ndi zida.

Research and Health webinars

Magawo awa, ochitidwa ndi DEBRA UK Director of Researcher Dr Sagair Hussain, ndi mwayi wabwino wophunzirira mitu yosiyanasiyana yokhudzana ndi EB, ndikuyankha mafunso anu ndi akatswiri.
Dziwani zambiri
Bolodi lolembedwapo mawu akuti "Dziwani Malamulo a Malangizo a Zochitika Pa intaneti!

Malangizo a zochitika pa intaneti

Zochitika zathu pa intaneti zimayendetsedwa kuti zikuthandizeni kulumikizana ndi mamembala ena. Kuti gawo lililonse likhale lolandirika, lothandizira komanso lotetezeka, tikukupemphani kuti mutsatire malangizo athu.
Dziwani zambiri
Chizindikiro cha DEBRA UK. Chizindikirocho chimakhala ndi zithunzi za gulugufe wabuluu komanso dzina la bungwe. Pansi pake, mawu akuti "The Butterfly Skin Charity.
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