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Abubuwan da suka faru na membobin DEBRA UK

liyafar karshen mako na Membobin DEBRA UK ta cika da jama'a da ke zaune a kusa da teburi, an yi musu ado da kayan teburi masu launin shudi da fari da shaye-shaye iri-iri, a karkashin hasken wuta, wanda ya haifar da yanayi na cikin gida. Babban rukuni na mutane, suna halartar ɗaya daga cikin abubuwan membobin DEBRA UK, suna zaune a zagaye teburi a cikin ɗakin liyafa tare da hasken shuɗi, suna tattaunawa da cin abinci.

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.

Abubuwan da suka faru kuma suna ba da dama ga membobi don haɗi tare da DEBRA EB Community Support Team da kuma jin ta bakin masana a fannin kiwon lafiya na EB.

Baya ga abubuwan da muke faruwa musamman ga membobin, wani lokacin ma muna karɓar adadi kaɗan tikitin kyauta don membobi don halartar wasu manyan abubuwan tara kuɗi na DEBRA.

Duba cikakken jerin abubuwan da suka faru na membobinmu

Nemo wani taron

Kullum muna tsara abubuwan da suka faru bisa ga abin da membobinmu suke so da buƙatu. Don haka, idan akwai wani abu da kuke son gani ko ƙasa da shi, ko kuma idan kuna da ra'ayin sabon taron, muna son jin shawarwarinku 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.
Mutane hudu sun fito waje a taron memba na DEBRA UK; wata mata ce a keken guragu a tsakiya, maza uku a tsaye a kusa da ita, duk suna murmushi ga kyamara.

Karshen Mambobin DEBRA

Makonnin Mambobi shine taronmu na ƙasa, kuma yana bawa membobi damar haɗi tare da sauran mutanen da ke rayuwa tare da kowane nau'in EB. Yana ba da dama don rabawa da koyo daga juna, jin daɗin ɗanɗano, da haɗi a wuri mai aminci wanda ke biyan bukatun mutanen da ke zaune tare da EB.
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
Jirgin sama, motar bas ta Landan, da manyan babura da motoci da aka nuna a waje a gidan kayan tarihi na Brooklands.

Haɗin Membobi: Gidan Tarihi na Brooklands

Kasance tare da mu a gidan kayan tarihi na Brooklands don jin daɗi, annashuwa da yamma don saduwa da sauran membobin EB. Hakanan za ku ji daɗin abin da wannan gidan kayan tarihi mai ban sha'awa zai bayar - bincika motocin gargajiya, motocin tsere, jirgin sama mai tarihi, da tarihin hanyar tseren tsere na farko a duniya.
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.
Wasu ma'aurata suna zaune a kan kujera, suna murmushi, rike da jariri. Matar tana sanye da rigar rigar rigar, namijin rigar beige da hula, sai jaririn farin kaya.

Mambobin Pitstops

Waɗannan abubuwan na kan layi kyauta suna ba da damar duk membobi, duka iyaye da masu kulawa da waɗanda ke zaune tare da EB, don haɗawa ta hanyar Zuƙowa da raba gogewa da ra'ayoyi game da batutuwan da suka dace da mutanen da ke rayuwa tare da kowane nau'in EB.
Ya koyi
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
David Williams daga Kungiyar Tallafawa Al'umma ta DEBRA EB, suna karbar bakuncin taron maza a karshen mako na Membobi 2024.

Kungiyar Maza DEBRA

Wannan taron rukuni na kan layi na wata-wata don membobi ne masu shekaru 18+ kuma wuri ne mai kyau don rabawa, saurare, kuma kawai magana da wasu maza waɗanda ƙila suna da irin wannan gogewa a gare ku.
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.