Game da DEBRA UK - Babban ƙungiyar agaji ta EB
Wanene mu
Mu ne ƙungiyar agaji ta ƙasa ta Burtaniya ga mutanen da cutar epidermolysis bullosa (EB) ta shafa . Muna tallafawa mambobi sama da 4,000 a faɗin Burtaniya, ciki har da mutane sama da 2,000 da ke zaune tare da EB. Kowace shekara, mambobi sama da 700 suna amfani da ayyukan tallafi. Muna nan ne don mutanen da ke da EB da aka gada, iyalansu da masu kula da su, da kuma ƙwararrun ma'aikatan kiwon lafiya da masu bincike. Tare da aikin tallafi, muna ba da kuɗi da kuma jagorantar muhimman binciken likita don inganta rayuwa.
Muna kuma ba da sabis na tallafi na al'umma ga mutanen da ke zaune tare da EB da aka samu, wanda aka sani da epidermolysis bullosa acquisita (EBA).
Phyllis Hilton ne ya kafa wannan sadaka a cikin 1978, wacce 'yarsa Debra ke da EB, a matsayin kungiyar tallafawa marasa lafiya ta EB ta farko a duniya.
DEBRA UK ta ci gaba da kafa DEBRA International, wacce yanzu ke gudanar da kanta don taimakawa wajen kafa da tallafawa cibiyar sadarwa ta duniya ta ƙungiyoyi sama da 50 na tallafawa marasa lafiya na DEBRA.
A shekarar 2025 mun kashe fam miliyan 3.9 a ayyukan agaji, wanda ya haɗa da tallafin al'umma na EB, binciken EB , ilimin jama'a, kiwon lafiya na EB na musamman , da hutun hutu ga membobinmu. Mun kuma kashe kusan fam miliyan 1 don taimakawa wajen tabbatar da cewa mutane da yawa a Burtaniya sun san EB da kuma abin da muke yi a matsayin agaji.
Tare da ƙarin sani muna fatan samun ƙarin tallafi saboda muna buƙatar mutane da yawa kamar yadda zai yiwu don tabbatar da hangen nesa na duniyar da babu wanda ke fama da EB gaskiya.
Muna matukar godiya da samun damar dogaro da goyon bayan abokan aikinmu da masu sa kai waɗanda ke taimaka mana wajen gudanar da hanyoyin sadarwar shagunan sadaka . Tare da sauran ayyukanmu na tara kuɗi, suna samar da kudaden shiga da ke ba mu damar isar da ayyukan kula da al'umma na EB na yau da kuma gudanar da bincike mai mahimmanci kan ingantattun magungunan EB ga dukkan nau'ikan EB na gobe.
Abin da muke yi
DEBRA UK ta wanzu don samar da kulawar al'umma da sabis na tallafi don inganta ingancin rayuwa ga mutanen da ke zaune tare da kowane nau'in EB da aka gada da kuma samu. Muna kuma ba da kuɗin bincike na farko don nemo ingantattun jiyya ga kowane nau'in EB da aka gada.
Daga gano kwayoyin halittar EB na farko zuwa bayar da kudade na gwaji na farko na asibiti a cikin jiyya na kwayoyin halitta da sake dawo da kwayoyi, mun taka muhimmiyar rawa a cikin binciken EB a duniya kuma muna da alhakin samun ci gaba mai mahimmanci wajen ci gaba da ganewar asali, jiyya, da gudanar da ayyukan yau da kullun na EB.
Mun himmatu don tabbatar da cewa kowane mutumin da ke zaune tare da EB a Burtaniya, danginsu, da masu kula da su sun sami tallafi mai fa'ida da yawa da suke buƙata.
Ƙara koyo game da yadda muke tara kuɗi da kuma yadda muke kashe kuɗi.
Muna haɗin gwiwa tare da NHS don isar da ingantaccen sabis na kiwon lafiya na EB wanda ke da mahimmanci ga mutanen da ke rayuwa tare da kowane nau'in EB.
Akwai cibiyoyin kiwon lafiya na EB guda huɗu da aka keɓe a cikin Burtaniya da sabis na EB na Scotland waɗanda ke ba da ƙwararrun EB kiwon lafiya da tallafi, da sauran wuraren asibitoci da asibitoci waɗanda ke da niyyar samar da ƙarin sabis na EB na gida.
Muna haɓakawa da ƙarfafa ɗaukar sabbin tsare-tsare da samar da kuɗi don haɓaka ayyukan da NHS ke da aikin kulawa don ba da majinyatan EB. Wannan ya haɗa da kayan aiki na ƙwararrun kamar ma'aikatan jinya na EB da masu cin abinci.
Muna kuma haɗin gwiwa da sauran ƙungiyoyi don samar da shawarwari da ayyukan kula da lafiyar kwakwalwa, samar da kuɗaɗen horo na EB, da kuma samar da jagororin aiki mafi kyau ga ƙwararrun ma'aikatan kiwon lafiya don taimaka musu su fahimci yadda ake kula da marasa lafiya da kowane nau'in EB.
Tafiyarmu zuwa kula da lafiyar EB mai haƙuri
Baya ga kafa yawancin abin da aka sani yanzu game da EB ta hanyar bincike na farko da kuma ƙaddamar da gwajin asibiti na farko na magungunan EB , mun kuma jagoranci hanyar tabbatar da cewa mutanen da ke da kowane nau'in EB suna da damar samun ƙwararrun kiwon lafiya na EB da ayyukan tallafawa al'umma.
Ƙara koyo game da wasu muhimman abubuwan da suka faru a tafiyarmu ta samar da kulawar lafiya ta EB da kuma tallafin al'umma mai da hankali kan marasa lafiya.
Ƙungiyar Tallafin Al'umma ta EB tana aiki tare da al'ummar EB, kiwon lafiya, da sauran ƙwararru don inganta rayuwar mutanen da ke fama da kowane irin EB.
Ƙungiyar tana ba da tallafi, shawarwari, bayanai, da taimako mai amfani a kowane mataki na rayuwa tare da EB.
Ƙungiyar membobin ƙungiya da haɗin gwiwa tana aiki kafada da kafada da membobi don haɓaka damar haɗin gwiwa da shiga, tare da tabbatar da cewa buƙatun membobinmu suna cikin zuciyar tunaninmu kuma suna taimakawa wajen jagorantar ayyukan da muke bayarwa ga dukkan al'ummar UK EB.
Tsarin membobinmu ya haɗa da damar samun rangwamen hutun hutu , tallafi , da kuma abubuwan da aka keɓance na musamman inda membobi daga ko'ina cikin Burtaniya za su iya haɗuwa don raba ilimi da gogewa, yin alaƙa mai mahimmanci da abota, da kuma samun shawarwari da tallafi daga ƙungiyar Tallafin Al'umma ta EB.
DEBRA UK ita ce babbar mai ba da kuɗi ga binciken EB a Burtaniya , kuma tana cikin manyan masu ba da kuɗi 15 na bincike da ke Burtaniya a duk faɗin cututtuka da yanayi da ke saka hannun jari a cikin bincike na duniya.
Tun lokacin da aka kafa mu a cikin 1978, mun saka hannun jari sama da £24m kuma mun kasance da alhakin, ta hanyar ba da tallafin bincike na majagaba da yin aiki a duniya, don kafa yawancin abin da aka sani game da EB yanzu.
Yanzu haka muna kan wani mataki na bincikenmu inda muke buƙatar hanzarta saurin gano cutar, don nemo ingantattun magungunan EB ga kowace irin EB. Mun fara wannan tafiya a shekarar 2023 ta hanyar ƙaddamar da gwajin asibiti na farko da muke amfani da shi don sake amfani da magungunan EB kuma muna fatan ƙaddamar da ƙarin gwaje-gwaje na asibiti a shekarar 2026 da kuma bayan haka.
A shekarar 2024 mun ba da umarnin yin wani bincike na James Lind Alliance (JLA) ga EB domin taimaka mana gano muhimman tambayoyin bincike da ba a amsa ba game da dukkan nau'ikan EB. Wannan zai taimaka mana mu fahimci irin binciken EB da ya kamata mu fifita a nan gaba.
Binciken EB JLA shine na farko da wata kungiya mai tallafawa marasa lafiya da ba kasafai ta ba da izini ba kuma zai rufe duk nau'ikan EB da aka gada. Yana da iyakacin duniya kuma zai haɗa da bayanai daga al'ummar EB na duniya; mutanen da ke zaune tare da kowane nau'in EB, masu kulawa, da ƙwararrun kiwon lafiya waɗanda ke aiki tare da waɗanda EB ta shafa. Muna sa ran ganin sakamako a shekarar 2025.
Ƙara koyo game da wasu muhimman abubuwan da suka faru a tafiyar bincikenmu.
Mu manufa, hangen nesa da kuma dabi'u
- Mu hangen nesa: Duniya inda babu wanda ke fama da epidermolysis bullosa (EB).
- Manufar mu: Ba da kulawa ta tsawon rai, yayin neman waraka, ga duk waɗanda abin ya shafa / abin ya shafa ta rayuwa tare da EB.
