Cov peev txheej rau cov kws kho mob
Nplooj ntawv no suav nrog cov peev txheej rau cov kws kho mob (HCPs) kho thiab tswj EB cov neeg mob.
Thov mus saib peb EB kev txhawb nqa thiab kev pabcuam rau cov ntsiab lus cuam tshuam rau cov kws kho mob uas tsis yog kws kho mob.
Publications
Nyob rau hauv tas li ntawd mus DEBRA International's Cov Kev Qhia Ua Txhaum Cai, muaj ntau qhov kev pab ntxiv muaj rau cov kws tshaj lij tswj EB cov neeg mob.
- Cov txheej txheem phais
- Tes Splinting Cov Lus Qhia thiab Kev Ua Si rau Cov Me Nyuam nrog epidermolysis bullosa
- © Birmingham Children's Hospital NHS Trust, muaj nyob ntawm no los ntawm kev tso cai los ntawm Birmingham Children's Hospital Occupational Therapy team
- Birmingham Women's & Children's NHS Foundation Trust kuj tau tsim ntau yam nplooj ntawv thiab cov yeeb yaj duab qhia ntawv rau cov kws tshaj lij.
- cov '2023 EB Patient Insight Study: Nkag siab Tus Neeg Saib Xyuas Kev Ua Haujlwm Zoo ntawm Lub Neej' daim ntawv tshaj tawm qhia txog cov txheej txheem ua kom tiav qhov kev tshawb fawb no, cov txiaj ntsig, thiab cov lus xaus tseem ceeb.
Yuav ua li cas xa mus rau EB Community Support Team
peb EB Pab Pawg Pabcuam Zej Zog ua haujlwm ze nrog cov kws kho mob thiab kws kho mob. Yog xav paub ntxiv txog cov txheej txheem xa mus no, thov nyeem tsab cai xa mus.
EB-CLINET pib
EB-CLINET yog lub platform thoob ntiaj teb uas lub hom phiaj los xyuas kom muaj kev saib xyuas neeg mob zoo tshaj plaws rau cov neeg muaj EB. Qhov kev pib no ua rau muaj kev hloov pauv tshiab los ntawm kev sib txuas EB cov kws kho mob, sib koom thiab khaws cov kws tshaj lij thiab txhawb kev sib koom tes thiab kev txhim kho.
Mental Health thiab Kab Mob Tsis tshua muaj
Kev Kho Mob 4 Kab Mob Tsis tshua muaj tau pib kawm online tshiab, 'Mental Health and Rare Disease', Qhov tseem ceeb uas ploj lawm puzzle piece hauv kev saib xyuas kab mob tsawg.
Lub module muaj 8 kev sib tham sib tshooj.
EB CPD module
Nws yog ib qho tseem ceeb uas txhua tus neeg nyob nrog txhua hom EB tau txais kev kuaj mob los ntawm HCP. Nrog rau qhov no lawv tuaj yeem nkag mus rau tus kws kho mob tshwj xeeb EB kev txhawb nqa los ntawm NHS. Lawv kuj tuaj yeem koom nrog DEBRA dawb thiab nkag mus rau peb cov kev pabcuam txhawb nqa thiab cov tswvcuab cov txiaj ntsig.
Txhawm rau txhawb HCPs hauv kev lees paub thiab kuaj EB, peb tau tsim CPD module tshiab. Tsim los ntawm kev koom tes nrog EB cov kws kho mob thiab GPs, CPD tuaj yeem nkag tau dawb ntawm NB Medical platform.
DISCLAIMER: DEBRA tsis tuaj yeem tuav lub luag haujlwm rau cov ntsiab lus ntawm cov chaw sab nraud.
Hnub kawg tshuaj xyuas: Lub Yim Hli 2025
Hnub tshuaj xyuas tom ntej: Lub Peb Hlis 2026