Lub website no siv cov ncuav qab zib kom peb thiaj li muab tau rau koj nrog tus neeg siv tau zoo tshaj plaws. Cov lus qhia hauv qab zib yog cia rau hauv koj tus browser thiab ua haujlwm xws li lees paub koj thaum koj rov qab mus rau peb lub vev xaib thiab pab peb pawg neeg kom nkag siab txog cov chaw hauv lub website koj pom ntau yam ntxim nyiam thiab siv tau.
Kev tshawb fawb thiab kev noj qab haus huv webinars
Peb Kev Tshawb Fawb thiab Kev Noj Qab Haus Huv webinar series yog tuav los ntawm DEBRA UK Tus Thawj Coj ntawm Kev Tshawb Fawb Dr Sagair Hussain thiab nthuav tawm ntau tus qhua hais lus nyob rau hauv lawv cov kev txawj ntse hauv EB tshawb fawb thiab kev kho mob. Cov kev sib tham no yuav yog lub sijhawm zoo los kawm txog cov ncauj lus sib txawv ntsig txog EB, thiab muaj koj cov lus nug los ntawm cov kws tshaj lij. Lawv qhib rau txhua tus thiab peb cov neeg hais lus siv cov lus yooj yim tab sis yuav muab lub sijhawm los nkag siab txog EB kev tshawb fawb thiab kev kho mob hauv qhov tob dua.
Sau npe rau webinars tom ntej thiab saib cov ntaub ntawv kaw los ntawm cov xwm txheej dhau los hauv qab no.
Webinars los txog
Koom nrog Dr David Brumbaugh, MD MSCS FAAP, Associate Professor ntawm University of Colorado School of Medicine, thiab Chief Medical Officer ntawm Children's Hospital Colorado USA.
Tuaj mus mloog thiab nug koj cov lus nug txog…
- Cov teeb meem digestive txuam nrog EB
- Cov teebmeem ntawm kev zom zaub mov rau menyuam yaus thiab cov neeg laus nyob nrog EB
- Cov kev kho mob rau cov teeb meem EB ua rau digestion
Xav paub ntau ntxiv txog qhov kev tshwm sim no tus neeg hais lus qhua:
Dr Brumbaugh yog tus kws kho mob plab menyuam yaus thiab ua tus Thawj Saib Xyuas Kev Kho Mob ntawm Tsev Kho Mob Menyuam Yaus Colorado, uas yog lub tsev kho mob menyuam yaus loj tshaj plaws hauv cheeb tsam Rocky Mountain. Nws cov chaw kho mob ntawm kev tsom xam suav nrog kev mob plab hnyuv loj rau menyuam yaus thiab cov teeb meem digestive hauv cov menyuam yaus / cov neeg laus nrog Epidermolysis Bullosa thiab kab mob neuromuscular.
Peb lub Ib Hlis webinar yog nyob rau lub sijhawm sib txawv los tso cai rau lub sijhawm sib txawv ntawm UK thiab Asmeskas. Tom qab ntawd, 2025 webinar series yuav txuas ntxiv rau thawj hnub Wednesday ntawm lub hli thaum 1 teev tsaus ntuj.
Koom nrog Dr Roland Zauner, Program Lead Drug Discovery & Repurposing ntawm EB Haus, Salzburg, Austria.
Tuaj mus mloog thiab nug koj cov lus nug txog…
- Cov phiaj xwm kho mob rau EB
- Kev tshuaj xyuas tshuaj los txheeb xyuas cov kev kho EB tshiab
- Cov txheej txheem tshiab hauv kev tshawb nrhiav tshuaj
Xav paub ntau ntxiv txog qhov kev tshwm sim no tus neeg hais lus qhua:
Dr Zauner yog ib tug kws paub txog molecular biologist nrog keeb kwm hauv engineering thiab software tsim kho. Nws tau koom nrog kev tshawb fawb EB rau ntau tshaj cuaj xyoo ntawm EB House hauv Salzburg, Austria, nrog rau kev txaus siab tshwj xeeb hauv qog nqaij hlav thiab kho qhov txhab. Nws koom nrog hauv kev tsim kho cov qog nqaij hlav me me uas tsis tshua muaj tshwm sim thiab ua rau kev tshawb nrhiav tshuaj preclinical tsom rau kev rov ua cov tshuaj rau kev kho mob qog noj ntshav.
Koom nrog Dr Inês Sequeira, Senior Lecturer ntawm Queen Mary University London, UK.
Tuaj mus mloog thiab nug koj cov lus nug txog…
- Kho thiab caws pliav hauv qhov ncauj
- Txheeb xyuas txoj hauv kev tshiab los pab EB lub qhov ncauj thiab kho daim tawv nqaij
- Lub xeev-of-the-art multiomics technologies hauv EB
Xav paub ntau ntxiv txog qhov kev tshwm sim no tus neeg hais lus qhua:
Dr Inês Sequeira yog Pawg Thawj Coj thiab Tus Thawj Coj Tus Thawj Coj ntawm Barts Center for Squamous Cancer - Lub Tsev Kawm Ntawv Kho Hniav, QMUL, UK. Nws tau kawm stem cell thiab cancer biology rau 20 xyoo dhau los. Nws txoj kev tshawb fawb tsom mus rau lub qhov ncauj mob qog noj ntshav thiab yuav ua li cas qhov txhab kho qhov sib txawv hauv qhov ncauj.
Previous webinars
Koom nrog Dr Emma Chambers, kws tshawb fawb thiab kws qhia ntawv ntawm Queen Mary's University, London.
Saib daim ntawv qhia kom paub txog…
- Peb 'biological tub rog' - lub cev tiv thaiv kab mob hlwb thiab cov proteins
- Yuav ua li cas lub cev tiv thaiv kab mob hlwb thiab cov protein ua o nyob rau hauv peb daim tawv nqaij
- Yuav ua li cas cov tshuaj tiv thaiv kab mob tuaj yeem ua haujlwm hauv EB
Xav paub ntau ntxiv txog qhov kev tshwm sim no tus neeg hais lus qhua:
Dr Chambers yog ib tug kws tshuaj tiv thaiv kab mob raws li Blizard Institute ntawm Queen Mary University of London. Nws tau txais ib qho Oliver Thomas EB Kev Sib Koom Tes kawm seb cov tshuaj tiv thaiv kab mob uas twb muaj lawm tuaj yeem txo EB hlwv los ntawm lub cev tiv thaiv kab mob thiab cov hlwb.
Koom nrog Dr Su Lwin, kws kho mob dermatologist thiab tus kws tshaj lij ntawm St John's Institute of Dermatology thiab King's College London.
Saib cov ntaub ntawv los mloog cov lus nug txog…
- Kev tshawb fawb tom qab kho noob rau EB
- Yuav ua li cas cov kab mob cell tuaj yeem pab EB cov tsos mob
- Cov kev kho mob no ua haujlwm li cas hauv kev xyaum
Xav paub ntau ntxiv txog qhov kev tshwm sim no tus neeg hais lus qhua:
Dr Lwin muaj ntau tshaj 10 xyoo kev paub hauv EB kev tshawb fawb, tshwj xeeb hauv kev kho noob caj noob ces thiab kev kho ntawm tes. Nws kuj tau mob siab rau kev nce qib tshuaj rov qab rau txhua hom EB.
Koom nrog Dr Rob Hynds, Senior Research Fellow ntawm University College London.
Saib cov ntaub ntawv los mloog cov lus nug txog…
- Qhov sib txawv ntawm EB tuaj yeem cuam tshuam li cas ntawm kev ua pa thiab lub ntsws.
- Kev kho ntawm tes thiab noob caj noob ces uas Dr Hynds ua haujlwm rau, thiab nws tuaj yeem siv tau li cas los pab tib neeg nrog EB.
- Cov kev kho tshiab Dr Hynds pab neeg ua haujlwm pab cov neeg muaj EB nrog lawv ua pa.
Xav paub ntau ntxiv txog qhov kev tshwm sim no tus neeg hais lus qhua:
Rob tau kawm raws li tus kws kho mob hlwb ntawm Durham University, University College London (UCL) thiab Lub koom haum Francis Crick ua ntej tsim cov pab pawg tshawb fawb EpiCENTR ntawm Zayed Center for Research into Rare Disease in Children at UCL hauv 2022. Rob pab neeg ua haujlwm nrog cov kws kho mob dermatologist thiab Cov kws kho mob pob ntseg, qhov ntswg thiab caj pas ntawm Great Ormond Street Tsev Kho Mob txhawm rau tshawb xyuas hom EB uas cuam tshuam rau txoj kev ua pa, thiab txhim kho cov kev kho tshiab raws li kev tshawb fawb ntawm tes thiab noob caj noob ces.
Koom nrog Kathryn Moore, tus kws pab tswv yim txog caj ces ntawm Yorkshire Regional Genetic Service raws li hauv Leeds.
Saib cov ntaub ntawv los mloog cov lus nug txog…
- Inheritance patterns of EB
- Cov niam txiv txoj kev kuaj caj ces ua ntej cev xeeb tub
- Kev kuaj caj ces thaum cev xeeb tub
Xav paub ntau ntxiv txog qhov kev tshwm sim no tus neeg hais lus qhua:
Kathryn tau ua tus kws pab tswv yim txog noob caj noob ces rau 6 xyoo dhau los ua haujlwm hla kev kuaj kab mob ua ntej, mob qog noj ntshav, mob plawv thiab ua ntej yug menyuam. Nws tau kawm tiav undergraduate degree hauv Kev Kho Mob Ntshav Qab Zib los ntawm University of Leicester thiab Masters hauv Kev Counseling los ntawm University of Sydney. Tom qab kawm hauv University of Sydney nws tau siv ob peb xyoos ua haujlwm rau New South Wales Kev Noj Qab Haus Huv hauv Australia ua ntej tsiv rov qab mus rau UK, mus rau Yorkshire Regional Genetic Service nyob hauv Leeds. Nws tau ua tiav nws qhov kev sau npe nrog Academy rau Kev Tshawb Fawb Kev Noj Qab Haus Huv txij li rov qab los rau UK thiab tau sawv cev rau Cov Kws Pab Tswv Yim Kho Mob uas yog cov tshiab rau txoj haujlwm ntawm Pawg Neeg Saib Xyuas Neeg Mob thiab Pawg Kws Pab Tswv Yim rau ob xyoos dhau los. Raws li ib feem ntawm nws lub luag haujlwm, Kathryn vam tias yuav txhim kho kev paub txog cov kev xaiv muaj nyob rau hauv cov noob caj noob ces kom cov tib neeg thiab tsev neeg tuaj yeem txiav txim siab paub txog kev kho mob ntawm lawv tsev neeg.
thov nco ntsoov: Kev tshawb fawb thiab kev noj qab haus huv webinars yog tsim txawv rau peb lwm yam kev tshwm sim hauv online raws li peb yuav tau sau cov qhua hais lus thiab kev nthuav qhia. Rau koj txoj kev nyab xeeb thiab kev nyab xeeb hauv online, koj yuav tsis tuaj yeem siv koj lub koob yees duab lossis tham ncaj qha nrog lwm tus neeg tuaj koom.