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Abubuwan da suka faru na membobin DEBRA UK

Wani ma'aikaci yana riƙe da alamar "Muna nan don taimakawa" a wani taron membobin DEBRA UK, yara suna tafiya a cikin jirgin ruwa, kuma wani mai jawabi yana gabatarwa ga masu sauraro a lokacin taron DEBRA.

Mun san yadda yake da mahimmanci ga membobin ƙungiyar EB su sami damar yin hulɗa da juna, raba gogewa da shawarwari, kulla abota, da yin nishaɗi, duk ba tare da bayyana menene EB ba.

Wannan shine dalilin da ya sa muka ƙirƙiri wani shiri na al'amuran ƙasa, yanki da kan layi ta yadda al'ummar EB za su iya haɗa cikin gida tare da yin hulɗa mai mahimmanci tare da membobin sauran sassan ƙasar.

Taronmu kuma yana samar da dama ga membobi su haɗu da Ƙungiyar Tallafawa Al'umma ta DEBRA EB da kuma jin ta bakin ƙwararru a fannin kiwon lafiya na EB.

Baya ga abubuwan da muke yi musamman ga membobi, wani lokacin kuma muna samun ƙarancin adadin tikitin kyauta ga membobi don halartar wasu manyan tarukan tara kuɗi na DEBRA.

Duba cikakken jerin abubuwan da suka faru na membobinmu

Nemo wani taron

Kullum muna tsara abubuwan da za mu yi bisa ga abin da membobinmu ke so da kuma abin da suke buƙata. Don haka, idan akwai wani abu da kake son gani ko kaɗan, ko kuma idan kana da ra'ayin wani sabon biki, za mu so jin shawarwarinka ta hanyar cike wannan fom.

Abubuwan da ke cikin mutum don membobin DEBRA UK

Membobin mu suna rayuwa duk fadin Birtaniya. Kamar yadda da yawa yi ba zauna kusa da juna da kuma ƙananan al'amuran gida ba ko da yaushe mai amfani, muna daukar nauyin al'amuran yanki daban-daban don haɗa mambobi a ko'ina shekara, ban da namu Karshen mako taron kasa.
Abubuwan da suka faru sun haɗa da ƙarshen mako na 'yancin kai musamman ga membobi masu shekaru 18+ a London, da ƙaddamar da mu kwanan nan Haɗin Gida.
Har ila yau, muna da niyyar haɗi tare da membobinmu a wasu abubuwan da suka faru na ɓangare na uku da nune-nunen kamar Naidex, babban taron Burtaniya don ƙarfafawa da tallafawa nakasassu.
Wata yarinya sanye da riga mai ruwan hoda da keken guragu tana riƙe da babban tunkiya mai kyau yayin da wata babba kusa da murmushinta, tare da jadawalin jadawalin a baya, wanda ke nuna yanayin goyon baya na Membobin Connect: Bristol.

Haɗa Membobi: Bristol

Ku kasance tare da mu a ranar Asabar 14 ga Nuwamba a Village Hotel Bristol don taron haɗin gwiwar membobin Bristol, musamman ga membobin DEBRA da iyalansu. Wannan taron mai sada zumunci da maraba dama ce mai kyau don saduwa da sauran membobi, yin sabbin alaƙa, raba abubuwan da suka faru, da kuma jin daɗin tallafin takwarorinsu a cikin yanayi mai annashuwa da rashin tsari. Ko kuna halartar taron DEBRA na farko ko kuma sake haɗuwa da fuskokin da kuka saba, za mu so mu gan ku a can don yin ranar tattaunawa, abota, da kuma al'umma.
Ya koyi
Wasu mata biyu suna zaune a teburin cin abinci, suna murmushi kuma suna magana akan abubuwan sha yayin ɗaya daga cikin abubuwan da suka faru na Local Connect na DEBRA.

Haɗin Gida

Abubuwan da suka faru na Haɗin gida ba na yau da kullun ba ne, wurin shiga cikin mutum wanda DEBRA's EB Community Support Team ke shiryawa, wanda aka tsara don haɗa mutanen da ke zaune tare da EB tare. Ana yin waɗannan a duk faɗin Burtaniya.
Ya koyi
Mai gyaran gashi a wani shagon gyaran gashi na Windermere yana shafa kayan gyaran gashi na Style and Smile a kan gashin mace mai laushi a gaban madubi mai haske—a yanzu haka aikace-aikacen yana buɗe!.

Salo da Murmushi

Ku kasance tare da mu a ranar Lahadi 27 ga Satumba don Style & Smile, wata kyakkyawar kwarewa ta musamman ta DEBRA ga mutanen da ke zaune tare da EB da iyalansu ko masu kula da su. Tare da haɗin gwiwar ƙwararrun masu gyaran gashi, masu gyaran gashi, masu gyaran gashi da mai ɗaukar hoto, za ku ji daɗin zaman gyaran gashi na musamman da ɗaukar hoto na ƙwararru wanda aka tsara don taimaka muku jin kwarin gwiwa da kuma farin ciki.
Ya koyi

Abubuwan kan layi don membobin DEBRA UK

Wadannan abubuwan da suka faru samar da dama ga lga wasu, to share dubaru da kwarewa, da to tattaunawa game da ra'ayoyin da suka shafi batutuwa da dama mai alaka da EB. Mafi mahimmanci, su ma samar da dama to sanin wasu membobin EB jama'a a cikin annashuwa, yanayi na yau da kullun.
Wata mata sanye da belun kunne tana zaune a tebur, tana murmushi tana kallon kwamfutar tafi-da-gidanka yayin wani gidan yanar gizon yanar gizo.

Gidan yanar gizo na Lafiya da Jin Dadi

Gidan yanar gizon Lafiya da Jin Dadin mu abubuwan kan layi kyauta ne. Suna ba da dama ga duk membobi don haɗi tare da wasu kuma su koyi game da batutuwan da suka shafi al'ummar EB.
Ya koyi
Dr Carina Graham a cikin rigar dakin gwaje-gwaje da safar hannu na zaune kan stool a dakin gwaje-gwaje, tana murmushi. Yana tsaye a gaban kaho mai kwararar laminar cike da kayan aikin lab da kayayyaki iri-iri.

Gidan yanar gizo na Bincike da Lafiya

Waɗannan zaman, wanda Daraktan Bincike na DEBRA na Burtaniya Dr Sagair Hussain ya shirya, dama ce mai kyau don koyo game da batutuwa daban-daban da suka shafi EB, kuma masana sun amsa tambayoyinku.
Ya koyi
Allon allo mai rubutu da aka liƙa a kai yana karanta "Sanin Dokokin don Jagororin Abubuwan Da Suka Shafi Kan Kan Layi!

Jagororin taron kan layi

Ana gudanar da al'amuran mu na kan layi don taimaka muku haɗi tare da sauran membobin. Don kiyaye kowane zama wuri maraba, tallafi da aminci, muna neman ku bi jagororin mu.
Ya koyi
Logo na DEBRA UK. Tambarin ya ƙunshi gumakan malam buɗe ido shuɗi da sunan ƙungiyar. Ƙarƙashin, alamar rubutun yana karanta "The Butterfly Skin Charity.
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Bayanin Sirri

Wannan shafin yanar gizon yana amfani da kukis domin mu iya ba ku damar kwarewa mafi kyau. Ana adana bayanin kuki a cikin burauzarka kuma yana aiki da ayyuka kamar gane da ku idan kun dawo zuwa shafin yanar gizon mu da kuma taimaka wa tawagar mu fahimci wane ɓangaren shafin yanar gizon da kuka samu mafi ban sha'awa da amfani.