Dakunan shan magani na DEBRA
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.
Asibitin aikace-aikacen mu na uku yana tafe Alhamis 12 Fabrairu 2026 a 6:30 na yamma. Idan kun kasance memba na DEBRA ko mai binciken EB yana tunanin ƙaddamar da tsari, da fatan za a yi rajista kafin Juma'a 23 ga Janairu don halartar taro na gaba. Muna fatan ganin ku a can!
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 mambobi, wannan wata dama ce don samun kusanci da binciken EB a cikin bututun, don sanya tambayoyinku game da binciken ga masu binciken da kansu da kuma taimakawa wajen tsara ayyukansu.
Ga masu bincike, babbar dama ce ta jama'a/haƙuri (PPI) yayin da kuke shirya shawarar bincikenku don ƙaddamarwa. Kuna iya tambayar waɗanda EB ta shafa kai tsaye game da takamaiman abubuwan ƙirar bincikenku kuma ku sami ra'ayi akan iya karantawa na sassan 'abstract' da 'darajar EB' na shawarwarinku waɗanda membobinmu za su sake dubawa.
Membobi da masu bincike sun yi rajista a gaba don halartar asibitin aikace-aikacen DEBRA. Za mu tambayi masu bincike don samar da wani daftarin tsarin "abstract", taƙaitaccen bayanin aikin binciken da aka rubuta a cikin sharuddan da ba na kimiyya ba, a gaban asibitin don mambobin su karanta. Za mu sanya su a matsayin sirri kuma za mu raba tare da membobin da ke halartar asibitin aikace-aikacen.
A lokacin asibitin aikace-aikacen, kowane mai bincike zai sami mintuna 20 tare da membobi don neman ra'ayi game da abubuwan da ba za a iya gani ba ko wasu abubuwan da aka gabatar na binciken su. Membobi za su iya tambayar masu bincike game da shawarwarin su kuma su raba kwarewar rayuwarsu ta EB.
Don ƙarin bayani, karanta labaran labaran mu game da Clinic aikace-aikace 2025 da kuma mu na farko Application Clinic a cikin 2024 gami da martani daga memba da masu halarta masu bincike.
Asibitin aikace-aikacen mu na gaba zai gudana a ranar 12 ga Fabrairu, 2026, 6:30 na yamma. Kuna iya yin rajista anan.
DEBRA za ta gudanar da taron kuma ta tabbatar da ajanda da zarar membobi da masu bincike suka shiga. Za mu goyi bayan duka masu bincike da membobin don samun mafi kyawun zaman ta hanyar raba bayanai da fayyace manufofin kowane mai bincike don zaman.
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. Membobin mu suna duba kuma su ci duk shawarwarin bayar da tallafi kafin Kwamitin Amintattun mu ya 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