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Kasance memba na DEBRA

Zama memba kyauta ne, mai sauƙi, kuma yana ba ku dama ga fa'idodin tallafi da fa'idodi.

Yana ɗaukar ɗan lokaci kaɗan kawai don yin hakan shiga cikin al'ummarmu!

Wanene zai iya zama memba?

Memba na DEBRA UK a buɗe yake ga duk wanda ke zaune tare da kowace irin cutar epidermolysis bullosa (EB) . Hakanan zaka iya zama memba idan kana goyon bayan wani da ke da EB a matsayin:

  • Iyaye
  • Mai kulawa
  • Dan uwa
  • Kwararrun kula da lafiya
  • Binciken

Kasance memba na DEBRA

Wani ma'aikaci da wani memba na DEBRA suna tsaye a teburin yin rijistar ƙarshen mako na Membobi, ɗaya yana miƙa takardu ga ɗayan, tare da kayan bayani da furanni a gaba.

Me yasa ya zama memba

Hoton farar layi na adadi na mutane uku da aka haɗe wuri ɗaya akan madaidaicin madauwari mai shuɗi.Al'umma da haɗin kai. Samun shiga m abubuwan da suka faru da kuma damar don haɗawa da wasu da ke zaune tare da EB.

Ta zama memba kawai, za ku kuma ƙarfafa al'ummarmu da ke ba da shawara don ingantaccen bincike, ƙwararrun kiwon lafiya, da haƙƙin duk wanda EB ya shafa a Burtaniya.

Farin fa'ida na bugun hannu akan allon waya tare da alamar sigina, saita da bangon madauwari mai shayi.Kasance farkon sani. - Sami sabbin labarai da albarkatu don mutanen da ke da EB kuma ku ji sabbin jiyya lokacin da suka samu.

 

Farar jerin abubuwan dubawa akan bangon madauwari mai shunayya, yana nuna takarda mai alamomi huɗu da layi.Ku san hakkinku. - Samun damar jagorar ƙwararru don ku san haƙƙin ku a kowane yanayi. Daga taimako tare da tafiye-tafiye, zuwa gyare-gyare a wurin aikin ku da duk abin da ke tsakanin.

 

Zane mai farin layi na hannaye biyu suna girgiza, mai siffar zuciya, akan bangon da'ira mai duhu mai duhu.Muna nan gare ku. - Yi amfani da namu bayanan EB na gidan yanar gizon da albarkatun, kuma suna da jagoran tawagar mu da sauraron kunne don tallafa muku ta kowane mataki na rayuwa. Kira Layin Taimakon mu na EB akan 01344 577689, akwai Litinin-Jumma'a, 8am-5:30pm.

Farar kalanda icon tare da tauraro a tsakiya, wanda aka zayyana akan bangon madauwari na orange.Biki na musamman. – Ji dadin zama a cikin mu kyawawan kewayon gidajen biki, tushen a kusa da Burtaniya a cikin wuraren shakatawa na 5* masu nasara, a farashi mai rahusa.

 

Farar alamar fam na Burtaniya akan madaidaicin haske shuɗi mai madauwari.Tallafin kudi. - Samu tallafin tallafi don abubuwa don taimaka muku rayuwa mafi kyau tare da EB, jagoranci na kudi, da ƙwarewar ƙungiyarmu don taimaka muku samun fa'idodin gwamnati da za ku iya cancanta.

 

Farin fa'ida na megaphone tare da layukan sauti akan madaidaicin madauwari mai shuɗi.Yi murya. – Abin ban sha’awa damar shiga a cikin ayyukan memba, taimakawa tsara makomar ayyukan mu na EB, da yanke shawarar irin binciken da za mu bayar na gaba.

Kuma ƙari!

Yi rijista a yau don karɓar lambar shaidar memba, jagorar zama memba, da duk abin da kuke buƙata don fara cin gajiyar zama memba na DEBRA.

Shaidu uku na shaida daga iyalai na ƙungiyar tallafin EB sun bayyana karɓar sutura, masu sanyaya sanyi, rangwamen hutu, da tallafi na tunani daga DEBRA. Kasance memba don samun damar waɗannan albarkatu masu mahimmanci idan epidermolysis bullosa ya shafe ku. Shaidu uku na shaida daga iyalai na ƙungiyar tallafin EB sun bayyana karɓar sutura, masu sanyaya sanyi, rangwamen hutu, da tallafi na tunani daga DEBRA. Kasance memba don samun damar waɗannan albarkatu masu mahimmanci idan epidermolysis bullosa ya shafe ku.

Kasance memba na DEBRA

Dalilin da yasa muke buƙatar sabbin mambobi kamar ku

Wata ma'aikaciyar jinya ta EB tana magana da mara lafiya a ɗaya daga cikin cibiyoyin EB na kyau.
Wata ma'aikaciyar jinya ta EB tana magana da memba na DEBRA a ɗayan cibiyoyin EB na ƙwarewa.

DEBRA koyaushe yana nan idan kuna buƙatar mu, amma muna buƙatar ku kuma. Da yawan membobin da muke da su, zai kasance da sauƙi a gare mu mu:

A wayar da kan jama'a game da EB. – A nuna mutane nawa ne ke zaune da EB, sannan a taimaka wa wasu su fahimci tasirinsa da kuma dalilin da ya sa kulawa da tallafi na musamman suke da mahimmanci ga duk wanda abin ya shafa.

Tallafa wa bincikenmu. – Samun ƙarin membobi zai iya ba mu ƙarin bayanai don taimakawa bincikenmu kan sake amfani da magunguna da kuma nemo sabbin magungunan EB.

Ba wa al'ummar EB murya mai ƙarfi. – Muryar gama gari mai ƙarfi daga ƙarin membobi yana taimaka mana mu yi amfani da gwamnati, NHS, da sauran ƙungiyoyi don inganta ayyuka ga duk mutanen da ke da EB.

Ƙara koyo game da DEBRA

Mu ƙungiyar tallafawa marasa lafiya ce ga mutanen da EB ta shafa, wanda aka fi sani da fata mai laushi. Mun wanzu ne don samar da ayyukan kula da al'umma da tallafi waɗanda ke taimakawa wajen inganta rayuwar kowane mutum da ke zaune tare da ko kuma wanda kowace irin EB ta shafa kai tsaye.

Baya ga tallafin da muke bayarwa, muna kuma ɗaya daga cikin manyan masu zuba jari a binciken EB a duk duniya. Muna ba da kuɗaɗen bincike na farko wanda ke da nufin nemo magunguna masu inganci ga dukkan nau'ikan EB da aka gada , don inganta rayuwar jama'a, da kuma fatan za a shirya hanyar neman magunguna.

Don samun ƙarin bayani game da duk abin da muke bayarwa don taimaka muku cin gajiyar membobin ku, zaku iya duba sigar dijital ta cikakken jagorarmu don zama memba na DEBRA.

Babu wani dalili da zai sa ka ƙi zama memba! Ba ya ɓata maka komai kuma za ka iya neman shiga cikin mintuna kaɗan.

Wataƙila ba za ku taɓa buƙatar mu ba, amma muna nan a gare ku lokacin da kuke so. Kuma ta zama memba za ka iya taimakawa wajen tabbatar da cewa sauran mutanen da ke zaune tare, ko kowane irin EB ya shafa kai tsaye, sun sami tallafin da suke bukata.

Kasance memba na DEBRA

Logo na DEBRA UK. Tambarin ya ƙunshi gumakan malam buɗe ido shuɗi da sunan ƙungiyar. Ƙarƙashin, alamar rubutun yana karanta "The Butterfly Skin Charity.
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.