Lithuto tsa rona tsa temohisiso
DEBRA ke mokhatlo oa tšehetso ea bakuli ba EB le e 'ngoe ea lichelete tse kholo ka ho fetisisa tsa lipatlisiso tsa EB lefatšeng ka bophara. Sepheo sa rona ke ho fana ka tlhokomelo le tšehetso ea bophelo bohle ho sechaba sa EB ha re ntse re tšehetsa lipatlisiso tsa pele ho fana ka kalafo e sebetsang bakeng sa mofuta o mong le o mong oa EB. Ntho ea bohlokoa morerong ona ke boitlamo ba rona ba ho netefatsa hore batho ba phelang le EB ba lula ba le pelong ea ntho e 'ngoe le e 'ngoe eo re e etsang.
Ho tšehetsa boitlamo bona, le ho netefatsa hore merero ea rona ea kamoso e bonahatsa ka ho toba se bohlokoa ka ho fetisisa ho litho tsa rona, DEBRA UK e laetse lithuto tse tharo tsa temohisiso:
- The 2023 EB Insights Thuto.
- The Thuto ea Tšebelisano-'moho ea ho Beha Lintho tsa Bohlokoa tsa EB ea 2025, e ileng ea latela mokhoa oa lipatlisiso oa James Lind Alliance.
- The Tlhahlobo ea Tšusumetso ea Litšebeletso tsa Litho tsa DEBRA ea 2026.
Hammoho, lithuto tsena li fana ka temohisiso ea bohlokoa mabapi le litlhoko tse sa fihlellehang tsa litho tsa DEBRA, lintho tsa bohlokoa tsa lipatlisiso tsa sechaba sa lefats'e sa EB, le katleho ea lits'ebeletso tsa litho tsa rona. Bopaki bona bo thusa ho bopa mananeo a rona a tšehetso le lipatlisiso nakong e tlang, ho netefatsa hore a tataisoa ke mantsoe, liphihlelo le lintho tsa bohlokoa tsa bao re leng mona ho ba tšehetsa.
Boithuto ba temohisiso ba EB bo supile lintlha tse 7 tsa bohlokoa tseo sechaba sa EB se re boleletseng hore li na le tšusumetso e kholo ho tsona. Tlaleho ea kakaretso e totobatsa liphetho tsa bohlokoa le mehato eo re tla e nka ho:
- ho ntlafatsa temoho le kutlwisiso ea mefuta eohle ea EB ho kenyeletsoa le har'a lingaka tsa mafu a kelello le lingaka tsa letlalo le ho khothaletsa litšupiso tse ling ho Litsi tsa tlhokomelo ea bophelo bo botle tse khethehileng tsa EB;
- ho rarolla ho se leka-lekane ha libaka tsa tlhokomelo ea bophelo ea setsebi sa EB;
- fana ka tshehetso ya ditjhelete ka lebaka la mathata a ditjeho tsa bophelo a etsang hore moroalo wa ho phela le EB o be boima;
- ntlafatsa hona joale Bophelo ba kelello tokisetso e fumanehang ka NHS bakeng sa batho ba phelang le EB le bahlokomeli ba bona;
- thusa bakuli/bahlokomeli ba EB ho fumana likhothaletso tsa kalafo ho tsoa ho bakuli ba bang ba EB;
- etsa hore lichelete tsa DEBRA li etse lipatlisiso mabapi le liphekolo pele;
- eketsa tšebelisano-'moho bakeng sa bakuli ba EB le Sehlopha sa Tšehetso ea Sechaba.
Maikutlo a tsoang phuputsong a tla thusa ho tseba ka masolo ao re a tsamaisang, liphuputso tseo re li tšehetsang ka lichelete, 'me haholo-holo, ho fumana hore na re etsa eng le hore na re e etsa joang.
Thuto ea Tšebelisano 'moho ea EB
Batho ba fetang makholo a 800, ba phelang le EB, ba hlokomelang motho ea nang le EB, kapa ba sebetsang le ba anngoeng ke EB, ba re boleletse lipotso tsa bona tse 10 tse holimo tse sa arajoang mabapi le EB. Sechaba sa lefats'e sa EB se sa tsoa nka karolo lithupelong tsa inthanete ho re thusa ho netefatsa le ho beha lipotso tse 10 tse holimo tsa ho qetela.
Lipotso tsena e tla ba leano la lipatlisiso la DEBRA ka lilemo tse tlang 'me li tla susumetsa lipatlisiso tsa EB lefatšeng ka bophara.
DEBRA UK e etelletse pele projeke ena le The James Lind Alliance hobane re lumela hore leano la rona la lipatlisiso le lokela ho khethoa ke sechaba sa EB . Maano a lipatlisiso hangata a tataisoa ke lithahasello tsa litsebi le bafuputsi. Empa re batla hore leano la rona la lipatlisiso le tataisoe ke uena - batho ba phelang le EB, kapa ba hlokomelang baratuoa letsatsi le letsatsi, le litsebi tse u tšehetsang.
Re sebelisane 'moho le Cure EB, DEBRA Ireland, DEBRA Canada, DEBRA International, le EB Research Partnership bakeng sa projeke ena, 'me hammoho re thehile EB Priority Setting Partnership e kenyeletsang bakuli le bahlokomeli ba amehileng ke EB, le litsebi tsa tlhokomelo ea bophelo bo botle.
Tlaleho ea Tlhahlobo ea Tšusumetso ea Litšebeletso tsa Litho tsa DEBRA
Tlhahlobo ena e ikemetseng e fana ka tlhahlobo ea bohlokoa le e nang le temohisiso ea phapang eo Litšebeletso tsa Litho tsa DEBRA li e etsang kajeno. Liphuputso li bontša ka ho hlaka tšusumetso e ntle eo tšehetso ea rona e nang le eona boleng ba bophelo:
- Ho matlafatsa likamano tsa sechaba.
- Ho fokotsa ho itšehla thajana.
- Ho ntlafatsa botsitso ba lichelete.
- Ho ntlafatsa boiketlo ba maikutlo.
- Ho nolofalletsa phihlello ea tlhokomelo ea bophelo bo botle e khethehileng.
E boetse e bontšitse hore ho hlokahala tlhokomelo e eketsehileng mosebetsing oa rona le litsebi tsa tlhokomelo ea bophelo bo botle, ho nts'etsapele tšehetso e sebetsang haholoanyane le e etselitsoeng lihlopha tse sa fuoeng tlhokomelo e lekaneng sechabeng sa EB, le ho netefatsa hore sohle seo re se etsang se kenyeletsa litho tsohle.
Maikutlo a litho tsa rona a tla tsebisa ka ho toba leano la DEBRA la lilemo tse tharo tse tlang, 'me re ikemiselitse ho matlafatsa le ho tsetela libakeng tse tharo tsa bohlokoa:
- Ho ntlafatsa phihlello ho litsebi tsa EB.
- Ho fana ka tšehetso ea maikutlo le ea lithaka.
- Ho theha menyetla ea sechaba le ea sechaba e kopanyang batho.
Ba boetse ba totobalitse moo re lokelang ho ea pele. Re tla araba ka:
- Ho atolosa phihlello ea rona ho litsebi tsa bophelo bo botle le tsa tlhokomelo ea sechaba ho feta litsebi tsa EB.
- Ho ntshetsa pele tšehetso e etselitsoeng lihlopha tse sa hlokeng tlhokomelo e lekaneng, haholo-holo bacha le batho ba baholo ba bacha.
- Ho nolofatsa le ho hlakisa puisano ea rona e le hore tlhahisoleseling e be bonolo ho e fumana le ho kenyeletsa litho tsohle, ho sa tsotelehe mofuta oa EB, jeokrafi, lilemo,
kapa boemo ba bophelo.
Mmoho, re ka leba bokamosong moo EB e utloisisoang hamolemo, e laoloang hamolemo, 'me e sa itšehle thajana ho bohle bao e ba amang.