Game da DEBRA UK - Babban ƙungiyar agaji ta EB

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.

Har ila yau, muna haɗin gwiwa tare da wasu kungiyoyi don samar da shawarwari da ayyukan jin daɗin lafiyar kwakwalwa, tallafawa horo na EB, da haɓakawa jagororin aiki mafi kyau ga ƙwararrun kiwon lafiya don taimaka musu su fahimci yadda ake bi da marasa lafiya tare da kowane nau'in EB.

Tafiyarmu zuwa kula da lafiyar EB mai haƙuri

Kazalika kafa mafi yawan abin da aka sani yanzu game da EB ta hanyar bincike na farko da ƙaddamar da EB na farko sake fasalin miyagun ƙwayoyi gwaji na asibiti, mun kuma jagoranci hanya don tabbatar da mutane masu kowane nau'in EB sun sami damar yin amfani da ƙwararrun EB na kiwon lafiya da sabis na tallafi na al'umma.

Nemo ƙarin game da wasu daga cikin muhimman abubuwan ci gaba a tafiyarmu don isar da kulawar lafiyar EB mai haƙuri da tallafin al'umma.

Mu Taimakon Al'umma na EB yana aiki tare da jama'ar EB, kiwon lafiya, da sauran ƙwararru don haɓaka ingancin rayuwa ga mutanen da ke rayuwa tare da kowane nau'in EB.

Ƙungiyar tana ba da tallafi, shawarwari, bayanai, da taimako mai amfani a kowane mataki na rayuwa tare da EB.

The membobinsu da ƙungiyar haɗin gwiwa yana aiki kafada da kafada tare da membobin don haɓaka haɗin kai da damar shiga, tabbatar da bukatun membobinmu suna cikin zuciyar tunaninmu da kuma taimakawa jagorar ayyukan da muke bayarwa ga ɗaukacin al'ummar UK EB.

Tsarin membobin mu ya haɗa da dama don rangwamen hutu gida hutu hutu, bayarwa, da kuma magana abubuwan da suka faru inda membobi daga ko'ina cikin Burtaniya za su iya taru don raba ilimi da gogewa, yin alaƙa mai mahimmanci da abokantaka, da samun damar shawarwari da goyan baya daga EBungiyar Tallafin Al'umma ta EB.

DEBRA UK ita ce mafi girman masu ba da tallafin Burtaniya Binciken EB, kuma a cikin manyan masu ba da tallafin bincike na tushen 15 na Burtaniya a duk cututtukan da yanayin 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 £22m 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 muna kan wani mataki na tafiyar bincikenmu inda muke buƙatar haɓaka saurin ganowa, don nemo ingantattun magungunan ƙwayoyi ga kowane nau'in EB. Mun fara wannan tafiya a cikin 2023 ta hanyar ƙaddamar da mu na farko Magungunan EB na sake fasalin gwajin asibiti kuma suna fatan ƙaddamar da ƙarin gwaji na asibiti a cikin 2025 da bayan haka.

A 2024 mun ba da umarni a James Lind Alliance (JLA) nazari don EB don taimaka mana gano mahimman tambayoyin bincike marasa amsa game da kowane nau'in EB. Wannan zai taimaka mana mu fahimci abin da binciken EB ya kamata mu ba da fifiko 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.

Nemo ƙarin game da wasu daga cikin muhimman matakai a tafiyar binciken mu.