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.
Dakunan shan magani
Kowace shekara, masu binciken EB daga ko'ina cikin duniya suna neman DEBRA don samun kuɗi don ayyukan binciken su. Nau'o'in masana daban-daban suna aiki tare da mu don tabbatar da cewa mun ba da kuɗin bincike mafi fa'ida ga al'ummar EB. Waɗannan ƙwararrun sun haɗa da membobinmu na DEBRA a matsayin ƙwararru ta gwaninta.
Bincike ya fi kyau idan an tsara ayyukan tare da haɗin gwiwar mutanen da za su amfana kai tsaye daga sakamakon. Anan ne asibitocin aikace-aikacen mu ke shigowa.
Our first application clinic, bringing researchers and members together, was held in February 2024 and we hope you will join us for the next one at 6:30pm on Thursday 13th February 2025. Please register your interest by Thursday 6th February.
Duk membobi zasu iya yi rajista don zama wani ɓangare na Cibiyar Shiga DEBRA don jin labarin waɗannan damar da farko.
Don ganin irin binciken da muke bayarwa a halin yanzu, ziyarci shafukan binciken mu.
Su na yau da kullun ne, tarurrukan kan layi suna haɗa membobin DEBRA da masu binciken EB kafin su nemi tallafi, don tattauna shawarwarin bincike da tsara su tare.
Ga membobin wannan dama ce ta kusanci binciken EB a cikin bututun, da kuma sanya tambayoyinku game da binciken ga masu binciken da kansu.
Ga masu bincike babbar dama ce ta jama'a/haƙuri (PPI) yayin da kuke shirya shawarar bincikenku don ƙaddamarwa. Kuna iya tambayar waɗanda EB ya shafa kai tsaye game da takamaiman abubuwan ƙirar bincikenku, ko kuna iya samun ra'ayi akan sassan 'abstract' da 'darajar EB' na shawarar ku.
Membobi da masu bincike sun yi rajista a gaba don halartar asibitin aikace-aikacen DEBRA. Masu binciken za su aika da daftarin juzu'i na "abstract", taƙaitaccen bayanin aikin binciken su da aka rubuta a cikin sharuddan da ba na kimiyya ba, kafin taron don mambobin su karanta. Waɗannan za a yi musu alama a matsayin sirri kuma za a raba su tare da membobin da ke halartar asibitin aikace-aikacen.
A lokacin asibitin aikace-aikacen kowane mai bincike zai sami mintuna 20 tare da membobin don neman ra'ayi game da abubuwan da ba za a iya gani ba ko wasu abubuwan da suka shafi shawarar binciken. Membobi za su iya tambayar masu bincike game da shawarwarin su kuma su raba kwarewar rayuwarsu ta EB.
karanta our news article about the first Application Clinic in 2024 including feedback from member and researcher attendees.
Our next application clinic will be held online at 6:30pm on 13th February 2025. The deadline to register your interest is 6th Fabrairu 2025. DEBRA will run the meeting and confirm the agenda once members and researchers are signed up. We will support both researchers and members to get the most out of the session by sharing information and clarifying the aims of each researcher for the session.
Dukanmu mun haɗu a cikin hangen nesa don duniyar da babu wanda ke fama da EB. Don cimma wannan, bincike a cikin EB ya kamata ya dace da bukatun al'ummar EB ta hanyar haɗa mutanen da ke da ƙwarewar rayuwa a cikin bincike tun daga lokacin ƙira.
Tsarin yarda da tallafin DEBRA ya nemi masu bincike su nuna yadda suka haɗa PPI cikin ƙirar aikin su. Dukkan shawarwarin bayar da tallafin membobin mu ne suka sake duba su kuma su ci nasara kafin Hukumar Amintattun mu ta yanke shawarar bayar da kudade na ƙarshe. Don haka yana iya biya da gaske don samun damar bayyanawa a sarari ga masu sauraron da ba su da ilimin kimiyya menene aikin ku, da kuma yadda zai ƙara ƙima ga al'ummar EB.
Masanin binciken EB da likita, Dokta Su Lwin, ya yi aiki tare da DEBRA don shigar da PPI a cikin ƙirar bincikenta, kuma ta ce:
Kwarewar farko na aiki tare da kwamitin haƙuri na DEBRA ya kasance mai inganci da taimako. Ina aiki akan ƙirƙira karatun da wani lokaci ya haɗa da hanyoyin cin zarafi ga mutanen da ke zaune tare da EB. Ta hanyar tattauna waɗannan al'amura tare da mutanen da suka rayu da kwarewa na EB, na iya fahimtar abin da sassan binciken suka dace ko a'a; da kuma irin nau'ikan da kuma hanyoyin da yawa sun yarda da su. Waɗannan cikakkun bayanai suna da matuƙar mahimmanci don taimakawa ƙirƙirar babban aikace-aikacen tallafi na kwanan nan akan aikin - Art-EB - don Ƙungiyar Binciken Likitan Likitan Kimiyyar Kimiyya. Ina matukar godiya ga DEBRA UK don taimakawa wajen tsara tarurrukan kwamitin marasa lafiya na EB, da kuma kwamitin don taimakawa wajen tsara aikace-aikacena.' – Dr Su Lwin