Zothandizira azachipatala
Mu tsamba lino mupeza maulalo opita ku mabuku ndi zinthu zothandizira akatswiri azaumoyo pakuwongolera chisamaliro cha odwala a EB. Kuyambira pa ma CPD omwe amathandiza kuzindikira zizindikiro, mpaka malangizo abwino azachipatala komanso chithandizo cha thanzi la maganizo.
Chonde pitani ku chithandizo chathu cha EB ndi zinthu zina zomwe zingakuthandizeni kudziwa zomwe zingakuthandizeni osati akatswiri azachipatala.
mabuku
Kuwonjezera pa malangizo a DEBRA International a Clinical Practice Guidelines , palinso zinthu zina zowonjezera zomwe zingapezeke kwa akatswiri oyang'anira chisamaliro cha odwala a EB.
- Njira zopangira opaleshoni
- Malangizo Ophatikizana Pamanja ndi Zochita Zolimbitsa Thupi za Ana omwe ali ndi epidermolysis bullosa
- © Birmingham Children's Hospital NHS Trust, ikupezeka pano ndi chilolezo chachifundo cha gulu la Birmingham Children's Hospital Occupational Therapy
- Birmingham Women's & Children's NHS Foundation Trust yapanganso zosiyanasiyana timapepala ndi mavidiyo ophunzitsa kwa akatswiri.
- The '2023 EB Patient Insight Study: Kumvetsetsa Carer Quality of Life' mwachidule chithunzi limasonyeza njira zomwe zachitidwa kuti amalize phunziroli, zotsatira zake, ndi mfundo zazikuluzikulu.
Momwe mungatumizire gulu la EB Community Support Team
Gulu lathu lothandizira anthu ammudzi la EB limagwira ntchito limodzi ndi akatswiri azachipatala ndi azaumoyo. Kuti mudziwe zambiri za njira yotumizira anthu kuchipatala, chonde werengani mfundo zotumizira anthu kuchipatala.
Ntchito ya EB-CLINET
EB-CLINET ndi nsanja yapadziko lonse lapansi yomwe cholinga chake ndi kuonetsetsa chisamaliro chabwino kwambiri cha odwala omwe ali ndi EB. Ntchitoyi imathandizira kupanga zatsopano polumikiza akatswiri azaumoyo a EB, kugawana ndi kusunga ukadaulo ndikulimbikitsa mgwirizano ndi chitukuko.
Thanzi la Maganizo ndi Matenda Osowa
Madokotala 4 Rare Diseases ayambitsa maphunziro atsopano pa intaneti, 'Umoyo Wamaganizo ndi Matenda Osawerengeka', chidutswa chofunikira kwambiri cha puzzle chomwe sichikupezeka mu chisamaliro cha matenda osowa.
Mutuwu uli ndi maphunziro 8 ochita zinthu.
Ma module a EB CPD
Ndikofunikira kuti aliyense amene ali ndi mtundu uliwonse wa EB apezeke ndi dokotala wodziwa bwino za matendawa. Ndi izi, amatha kupeza thandizo lachipatala la EB kudzera mu NHS.
Pofuna kuthandiza akatswiri azaumoyo kuzindikira zizindikiro za EB, tapanga ma module atsopano a EB CPD.
CHODZIWANI : DEBRA sangaimbidwe mlandu pa zomwe zili m'mawebusayiti akunja.
Tsiku lomaliza lomaliza: Ogasiti 2025
Tsiku lobwereza lotsatira: Marichi 2026