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DEBRA UK Ntchito za Amembala - Chithandizo cha gulu la EB

Ntchito za membala ndi nthawi yoyambira zonse zomwe ife ngati zachifundo timapereka kwa mamembala athu - anthu omwe akukhala kapena kukhudzidwa mwachindunji ndi mitundu yonse ya EB ku UK omwe ali gawo la DEBRA UK chiwembu cha umembala.
Khalani membala wa DEBRA UK
Ntchito za membala zimaphatikizanso mwayi wopita ku Gulu Lothandizira la DEBRA EB, nyumba zatchuthi zochotsera, ndalama zothandizira, maso ndi maso ndi zochitika zamagulu a EB, maukonde athu okhudzidwa ndi zina.
Ntchito za membala zitha kuwonedwa ngati ambulera; mwina simungafune nthawi zonse koma ndizothandiza kukhala nayo pafupi ndi dzanja mukafuna.
Timapereka chithandizo, zidziwitso, zothandizira ndi mwayi kwa anthu azaka zilizonse ndi mtundu uliwonse wa EB.
Pansipa mupeza zambiri zokhudzana ndi ntchito za mamembala athu. Komabe, ngati simukupeza zomwe mukufuna kapena mungafune kulankhula ndi munthu wina, chonde titumizireni, tabwera kuti tikuthandizeni.
Gulu la DEBRA EB Community Support Team lili pano kuti lithandizire mamembala athu pafoni, kudzera pa imelo, pafupifupi komanso payekhapayekha, chilichonse chomwe chingakuthandizireni. Timapereka khutu lomvetsera ndikupereka chithandizo chothandiza mukachifuna kwambiri, kuphatikiza:
- Kuthandizira zolinga zanu ndi ubwino.
- Kugwiritsa ntchito zomwe takumana nazo pazaufulu za olumala ndi EB kukuyimirani m'malo mwanu kuwonetsetsa kuti mukumvedwa, zosoweka zanu zizindikirika, ndipo muli ndi mwayi wopeza chithandizo chomwe mukufuna komanso chomwe muli nacho.
- Kuchokera pakuzindikira matenda kupita m'tsogolo, ngati mukufunikira thandizo lachipatala la EB tidzagwira ntchito mogwirizana ndi magulu achipatala a ana ndi akuluakulu a EB kuti muwonetsetse kuti mukupeza chithandizo chomwe mukufuna.
- Tidzakhalapo kwa inu paulendo wanu wamoyo ndi EB yopereka chithandizo panthawi ya kusintha, nthawi zovuta, ndi nthawi zonse zapakati.
- Tikukuthandizani kuti muteteze nyumba yoyenera, ndikupeza zosinthika, zida zapadera, ndi chisamaliro cha anthu.
Mtengo DEBRA EB Gulu Lothandizira Anthu ali luso mu mapindu ndi EB ndi ngati muli membala iwo mungathe thandizo inu kupeza aliyense mapindu omwe mungakhale nawo, kuphatikiza mapindu olemala, mwachindunji malipiro ndi zina ndalama Thandizeni. The gulu mukhoza chikwangwani iwe uyenera njira zina zothandizira ndalama ndi mabungwe opereka ndalama, ndi kupyola DEBRA UK Mutha kuyika zothandizira ma grants kuti apititse patsogolo kudziyimira pawokha komanso moyo wabwino. Kuti mudziwe zambiri, chonde pitani patsamba lathu lazabwino komanso lazachuma.
Kulowa nafe ngati membala amakulolani kuti mukhale mu imodzi mwanyumba zathu zatchuthi zomwe zili m'mapaki 5 * ovoteledwa ku UK.
Monga membala muli ndi ufulu wokhala ndi tchuthi chotsika mtengo kwambiri chomwe chingakhale chotsika mpaka 75% kuposa mtengo wamsika ndipo nyumba zathu zonse zatchuthi zasinthidwa, momwe tingathere, kuti tikwaniritse zosowa zosiyanasiyana za anthu omwe ali ndi mitundu yonse ya EB. .
Kuti mumve zambiri komanso kuti musungitse malo okhala, chonde pitani kwathu tsamba lanyumba za tchuthi.
Events
Timapereka zochitika zosiyanasiyana za mamembala chaka chonse zomwe zimapereka mwayi wolumikizana pamasom'pamaso kapena pafupifupi (kudzera pamisonkhano yapaintaneti), kugawana zokumana nazo, kumva kuchokera kwa akatswiri a EB, ndikukambirana mitu yosiyanasiyana yokhudzana ndi EB.
Pulogalamu yathu yazochitika imapanganso mwayi wocheza nawo pomwe maubwenzi amatha kupanga, ndipo mamembala amatha kumva kuti ali m'gulu lalikulu.
Mwayi wophatikizidwa
Timayika mawu a mamembala athu pamtima pa chilichonse chomwe timachita. Chifukwa chake, ngati mungafune kugwiritsa ntchito zomwe mwakumana nazo kuti zithandizire kukonza tsogolo la ntchito zathu za EB, sankhani kafukufuku womwe tidzapezekepo, kapena kukonza zochitika za mamembala athu, pali zambiri zoti muchite, kuphatikiza:
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- Kulowa m'magulu athu omwe tinkakumana nawo ndikugawana nkhani zanu ndi zomwe mwakumana nazo kuti mudziwitse za EB.
- Kutenga nawo mbali pokopa anthu kuti muthandize kudziwitsa anthu za EB ndi zosowa za anthu omwe ali ndi EB ndi ndale kwanuko.
- Kukhala trustee kapena kudzipereka mu imodzi mwa malo ogulitsa 90+ omwe ali ku England ndi Scotland
- Kutithandiza kukweza ndalama ndi kuzindikira.
Aliyense amene amatenga nawo mbali amapanga kusiyana kwakukulu kwa ife ndi gulu lonse la EB.
Kuti mudziwe zambiri za mwayi wotenga nawo mbali ku DEBRA UK, chonde pitani kwathu tsamba la mamembala.
Monga membala wa DEBRA UK mudzatero landirani nkhani zaposachedwa za kafukufuku ndi zidziwitso za EB kudzera pa imelo, nkhani zamakalata, ma podcasts, malo ochezera a pa Intaneti, komanso payekha ngati mungafune kupita ku misonkhano yathu. zambiri mwamunthu komanso zenizeni zochitika. Tilinso ndi gawo lomwe likukula mosalekeza la zidziwitso zokhudzana ndi EB ndi zida zomwe zilipo m'malo a mamembala a tsamba la DEBRA UK.
Ma FAQ a umembala a DEBRA
DEBRA UK ndi bungwe lachifundo komanso lothandizira odwala kwa anthu okhala nawo mitundu yonse ya kubadwa ndi anapeza EB. Thandizo liripo kuti lipereke zambiri, zothandizira, ndi chithandizo kwa gulu lonse la EB ku UK; anthu azaka zonse omwe amakhala nawo, kapena okhudzidwa mwachindunji ndi mitundu yonse ya EB.
DEBRA UK ikufuna kukonza moyo wabwino kwa aliyense wokhala naye kapena kukhudzidwa mwachindunji EB lero ndikuwonetsetsa kuti m'tsogolomu pali mankhwala ovomerezeka amtundu uliwonse wa EB.
Mungapeze zambiri za ife pano.
Titha kuganizira zifukwa 10!
1 - Ndi mfulu kwathunthu!
2 - Lowani nafe ndipo mudzakhala kujowina gulu la EB.
Lowani nawo gulu la anthu pafupifupi 4,000 ku UK omwe akukhala kapena kukhudzidwa mwachindunji ndi EB, anthu omwe amamvetsetsa momwe zimakhalira kukhala ndi vutoli, anthu omwe mungalumikizane nawo, kupanga zibwenzi, ndikugawana nawo malingaliro ndi zokumana nazo.
3 - Umembala umakupatsani mwayi wodziwa zambiri za EB ndi chithandizo.
Gulu la DEBRA EB Community Support Team limapereka khutu lakumvetsera ndipo limapereka chidziwitso cha EB ndi chithandizo pafoni, pafupifupi, komanso payekha ngati pakufunika. Gululo limamvetsetsa EB ndi zovuta zina zomwe mungakhale mukukumana nazo. Iwo ali odziwa zambiri za ufulu wolumala ndi EB, ndipo angapereke zambiri, zothandizira, ndi zothandiza, zachuma, ndi chithandizo chamaganizo ndi chitsogozo. Atha kukulimbikitsani ngati ndikupeza chithandizo chowonjezera kusukulu, kulankhula ndi GP wanu za EB ndi zosowa zanu zenizeni, kukambirana ndi abwana anu zakusintha kulikonse komwe kungafunike, kapena kulumikizana ndi magulu azachipatala a NHS EB pa chilichonse. zofunikira zachipatala zomwe mungakhale nazo.
Gululi lilipo kuti likupatseni chidziwitso ndi zothandizira zomwe mukufuna panthawi ya kusintha, nthawi zovuta, komanso nthawi zonse pakati. Kaya zili pamiyezo yofunika kwambiri ya moyo monga kusintha kuchokera ku maphunziro a pulaimale kupita ku sekondale, kupita ku maphunziro owonjezera kapena ntchito, kapena kukhala ndi nyumba, kupeza zosinthika ndi zothandizira kuyenda, kudziyimira pawokha, chisamaliro chaumoyo, kapena chithandizo chamasiye.
Kaya moyo wanu uli wotani, komanso mtundu uliwonse wa EB, gulu lili pano kuti mupeze funso lililonse lomwe mungakhale nalo, lalikulu kapena laling'ono.
4 - Umembala umakupatsani mwayi wopeza chithandizo chaulere ndi ndalama ndi zopindulitsa.
Gulu la DEBRA la EB Community Support Team lingakuthandizeni kupeza zopindula zomwe mungakhale nazo, kuphatikizirapo kukuthandizani ndi zopempha zopindula ndi olumala kapena madandaulo.
Atha kukuthandizaninso pamafunso azachuma kapena mavuto angongole ndipo atha kukulemberani zidziwitso zina zandalama ndi zothandizira, njira zandalama, kapena mabungwe omwe amapereka chithandizo.
5 - Mamembala amalandira zosintha zaulere za EB, zambiri, ndi zothandizira.
As membala mudzalandira kalata yaulere kawiri pachaka ya EB Matters yodzaza ndi nkhani komanso zambiri za kafukufuku wa EB, zochitika, nkhani za mamembala, mwayi wochitapo kanthu, kuphatikiza zolemba zamakalata za EB Matters zomwe zimakusinthani pa chilichonse EB.
Mamembala athanso kupempha zofalitsa zamaluso kuti zithandizire kuphunzitsa ena za EB, kuphatikiza buku la nkhani ya Debra the Zebra, lopangidwa kuti lithandizire ana kuphunzitsa anzawo amkalasi za EB ndi tanthauzo la kukhala ndi vutoli.
Mukajowina koyamba ngati membala mudzalandiranso khadi ya 'I have EB' komanso khadi yazachipatala. Zofunikira izi zili ndi chidziwitso chofunikira chomwe anthu onse komanso akatswiri azachipatala ayenera kudziwa za EB yanu komanso chidziwitso chofunikira ngati mutafuna chithandizo chamankhwala.
6 - Pokhala membala, mutha kulandira thandizo la DEBRA UK.
Monga membala mutha kupeza ndalama zothandizira zomwe zingapangitse moyo kukhala wosavuta kwa inu, kukulitsa ufulu wanu wodziyimira pawokha, komanso moyo wabwino.
Mamembala atha kufunsira thandizo lothandizira zinthu zosiyanasiyana kuphatikiza maulendo ndi malo ogona kuti awonetsetse kuti nthawi yofunikira yachipatala ya EB ikhoza kupezeka, zopereka zapanyumba zotsika mtengo m'nyumba za tchuthi za DEBRA UK, ndi zinthu zapadera zomwe zingathandize kuchepetsa zizindikiro za EB.
7 - Mamembala atha kulowa nawo zochitika zamagulu a EB.
Gulu la Mamembala la DEBRA limayendetsa zochitika zapa-munthu komanso zapaintaneti makamaka za mamembala chaka chonse. Zochitika izi zimapereka mwayi wolumikizana ndi mamembala ena agulu la EB, kumva kuchokera kwa akatswiri a EB, ndikukambirana mitu yokhudzana ndi EB.
8 - Mamembala atha kupeza zopumira zotsika mtengo ku DEBRA UK nyumba zatchuthi.
Monga membala muli ndi ufulu wokhala mu imodzi mwanyumba zathu zatchuthi pamtengo wotsika kwambiri.
Nyumba zathu zatchuthi zitha kupezeka m'malo opumira 5 * omwe adapambana mphoto m'malo okongola ku UK kuphatikiza Cornwall, Lake District, Jurassic Coast, North Wales, ndi Norfolk Coast, ndikupereka mwayi wabwino wopumula komanso nthawi yabanja. m'malo opangidwa, momwe angathere, kuti akwaniritse zosowa zosiyanasiyana za anthu okhala ndi mitundu yonse ya EB.
9 - Mamembala amagula zinthu zotsika mtengo.
Mamembala ali ndi ufulu wochotsera 10% pa kugula kulikonse m'masitolo athu achifundo 90+ omwe ali ku England ndi Scotland.
Masitolo athu amapereka zinthu zambiri zamtengo wapatali, zapamwamba zomwe zimakonda kale kuphatikizapo zovala, nsapato ndi zikwama, katundu wapakhomo, magetsi, ndi m'masitolo ena, mipando.
10 - Umembala umakupatsani mwayi wothandizira ntchito yathu yofunika, kunena zonena zanu, ndikukhala kusiyana kwa EB.
Pokhala membala, mutha kusintha polembetsa ku netiweki yathu yokhudzidwa.
Mamembala a netiweki yathu yotenga nawo mbali amapempha zomwe adakumana nazo mu EB kuti zithandizire kukonza tsogolo la bungwe lachifundo kuphatikiza mapulojekiti ofufuza omwe timapereka ndalama, tsogolo la ntchito zathu za EB, ndi zochitika zomwe timayendera gulu la EB.
Kupyolera mu maukonde okhudzidwa, inu ngati membala mungathe kupanga kusiyana kwakukulu ku bungwe lachifundo, zomwe timachita ndi momwe timachitira, komanso kwa anthu onse ammudzi, kuwonetsetsa kuti aliyense amene ali ndi EB kapena akukhudzidwa mwachindunji ndi EB, amalandira chithandizo ndi ntchito zomwe akufunikira. ambiri.
Ndinu oyenerera bwerani nafe ngati membala ngati mukukhala ku UK, ndikufananiza chilichonse mwa izi:
- muli ndi matenda a EB kapena mukuyembekezera matenda.
- ndi wachibale (kholo, womulera, mwamuna kapena mkazi, mwana kapena mchimwene wake) kapena wolera wosalipidwa wa wina yemwe ali ndi EB. Wothandizira osalipidwa ndi munthu yemwe amapereka chithandizo cha EB pa sabata kapena kuposerapo.
- ndinu katswiri wazachipatala (kuphatikiza olera olipidwa) okhazikika pa EB kapena muli ndi chidwi ndi EB.
- ndinu ofufuza omwe ali ndi EB kapena muli ndi chidwi ndi EB.
Ndi zaulere kujowina DEBRA UK ndipo mutha kulembetsa kuti mulowe nawo mphindi zochepa.
Tikufuna kuthandiza anthu ambiri omwe ali ndi EB momwe tingathere, kotero, ngati muli ndi achibale kapena abwenzi omwe ali ndi EB omwe sali mamembala pakalipano, chonde alimbikitseni kuti alowe nawo kuti athe kupindula ndi chithandizo chathu komanso phindu la mamembala. .
Osadandaula, DEBRA UK ndi gawo la mabungwe othandizira odwala a DEBRA omwe alipo kuti athandizire gulu lapadziko lonse la EB.
Kuti mudziwe zambiri za bungwe lanu lothandizira odwala la DEBRA, chonde pitani patsamba la DEBRA International pezani gulu lanu la DEBRA.