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Mabapi le DEBRA UK - Mokhatlo o ka sehloohong oa liphallelo oa EB
re bo-mang
We are a UK EB charity; a national medical research charity and patient support organisation for anyone in the UK living with an inherited form of EB, their family members, carers, plus healthcare professionals and researchers specialising in Epidermolysis bullosa (EB).
Hape re fana ka lits'ebeletso tsa ts'ehetso ea sechaba bakeng sa batho ba phelang le EB e fumanoeng, e tsejoang e le epidermolysis bullosa acquisita (EBA).
Mokhatlo oa liphallelo o thehiloe ka 1978 ke Phyllis Hilton, eo morali oa hae Debra a neng a e-na le EB, e le mokhatlo oa pele oa lefatše oa tšehetso ea bakuli ba EB.
DEBRA UK e tsoetse pele ho theha DEBRA International, eo hajoale e sebetsang e ikemetseng ho thusa ho theha le ho ts'ehetsa marang-rang a lefats'e a fetang 50. Mekhatlo ea tšehetso ea bakuli ba DEBRA.
UK re mokhatlo oa tšehetso oa bakuli oa EB o nang le litho tse ka bang 4,000. Selemo se seng le se seng, litho tse fetang 1,000 tsa rona li fumana litšebeletso tsa rona tsa tšehetso.
In 2023 we invested almost £3.5m in EB lipatlisiso, EB community care and support, and EB setsebi sa tlhokomelo ea bophelo bo botle. We also spent close to £1m to help ensure more people in the UK are aware of EB and of what we do as a charity.
Ka tlhokomeliso e eketsehileng re na le tšepo ea ho fumana tšehetso e eketsehileng hobane re hloka batho ba bangata kamoo ho ka khonehang ho etsa hore pono ea rona ea lefats'e leo ho seng motho ea nang le bothata ba EB e be ntho ea sebele.
We employ 370 colleagues and are incredibly grateful to be able to count on the support of over 1,000 volunteers who help us run our network of over 80 charity shops, which along with our other fundraising activities, provides the revenue we need to provide EB community care and support services for today and to conduct research into effective EB treatments for all types of EB for tomorrow.
Seo re se etsang
DEBRA UK e teng ho fana ka litšebeletso tsa tlhokomelo ea sechaba le ts'ehetso ho ntlafatsa bophelo ba batho ba phelang le mefuta eohle ea EB e futsitsoeng le e fumanoeng. Re boetse re tšehetsa lipatlisiso tsa bopula-maliboho ho fumana liphekolo tse sebetsang bakeng sa mefuta eohle ea EB e futsitsoeng.
Ho tloha ka ho sibolla liphatsa tsa lefutso tsa pele tsa EB ho ea ho lichelete tsa liteko tsa pele tsa bongaka tsa phekolo ea lefutso le phepelo ea lithethefatsi, re phethile karolo ea bohlokoa liphuputsong tsa EB lefatšeng ka bophara 'me re bile le boikarabelo ba ho etsa tsoelo-pele e kholo ho ntšetseng pele tlhahlobo ea mafu, phekolo le tsamaiso ea letsatsi le letsatsi ea EB.
Re ikemiselitse ho etsa bonnete ba hore motho e mong le e mong ea phelang le EB UK, malapa a bona, le bahlokomeli ba bona ba fumana tšehetso ea bohlokoa le e pharaletseng eo ba e hlokang.
Fumana ho eketsehileng ka hore na re joang phahamisetsa 'me qeta chelete.
Re sebelisana 'moho le NHS ho fana ka ts'ebeletso e ntlafalitsoeng ea tlhokomelo ea bophelo ea EB e bohlokoa ho batho ba phelang le mefuta eohle ea EB.
Ho na le litsi tse 'nè tse khethiloeng tsa EB tsa bophelo bo botle UK le tšebeletso ea Scottish EB e fanang ka setsebi sa litsebi tsa tlhokomelo ea bophelo le tšehetso ea EB, hammoho le libaka tse ling tsa lipetlele le litleliniki tse ikemiselitseng ho fana ka litšebeletso tse ling tsa EB tsa lehae.
Re hlahisa le ho khothaletsa ho amoheloa ha mekhoa e mecha le ho fana ka lichelete ho ntlafatsa litšebeletso tseo NHS e nang le boikarabelo ba ho fana ka tsona ho bakuli ba EB. Sena se kenyelletsa lisebelisoa tse ikhethang joalo ka baoki ba EB le litsebi tsa lijo.
We also partner with other organisations to provide counselling and mental health wellbeing services, fund EB training, and develop best practice guidelines for healthcare professionals to help them understand how to treat patients with all types of EB.
Leeto la rona la ho ea tlhokomelong ea bophelo bo botle ba bakuli ba EB
As well establishing much of what is now known about EB through pioneering research and commissioning the first EB tšebeliso ea lithethefatsi clinical trial, we have also led the way in ensuring people with all types of EB have access to world-leading specialist EB healthcare and community support services.
Fumana ho eketsehileng ka tse ling tsa key milestones on our journey to delivering patient-centric EB healthcare and community support.
Our Sehlopha sa Tšehetso sa Sechaba sa EB works with the EB community, healthcare, and other professionals to improve quality of life for people living with all types of EB.
Sehlopha se fana ka ts'ehetso, bobuelli, tlhaiso-leseling, le thuso e sebetsang maemong ohle a bophelo ka EB.
The membership and engagement team works closely with members to maximise engagement and involvement opportunities, ensuring the needs of our members are at the heart of our thinking and help guide the services we offer for the entire UK EB community.
Our membership scheme includes opportunities for discounted holiday home respite breaks, lithuso, and bespoke liketsahalo where members from across the UK can come together to share knowledge and experience, make vital connections and friendships, and access expert advice and support from our EB Community Support Team.
DEBRA UK ke motšehetsi e moholo oa UK oa EB lipatlisiso, and in the top 15 UK-based research funders across all diseases and conditions investing in global research.
Ho tloha ha re theoa ka 1978, re tsetetse chelete e fetang £22m 'me re ikarabella, ka ho tšehetsa lipatlisiso tsa bopula-maliboho ka lichelete le ho sebetsa linaheng tse ling, bakeng sa ho theha boholo ba seo hona joale se tsejoang ka EB.
Hona joale re mothating oa leeto la rona la lipatlisiso moo re hlokang ho potlakisa lebelo la ho sibolla, ho fumana kalafo e sebetsang ea lithethefatsi bakeng sa mofuta o mong le o mong oa EB. Re qalile leeto lena ka 2023 ka ho laela la rona la pele Teko ea meriana ea EB e khutlisetsang teko ea bongaka 'me re tšepa ho fana ka liteko tse ling tsa bongaka ka 2025 le ho feta.
In 2024 we commissioned a James Lind Alliance (JLA) study for EB to help us identify the most important unanswered research questions about all types of EB. This will help us understand what EB research we should be prioritising in the future.
Thuto ea EB JLA ke ea pele ea ho romelloa ke mokhatlo o sa tloaelehang oa tšehetso ea bakuli ba mafu 'me o tla koahela mefuta eohle ea EB e futsitsoeng. Ke ea machaba 'me e tla kenyelletsa maikutlo a tsoang ho sechaba sa lefats'e sa EB; batho ba phelang le mefuta eohle ea EB, bahlokomeli, le litsebi tsa tlhokomelo ea bophelo tse sebetsang le ba anngoeng ke EB. Re lebeletse ho bona liphetho ka 2025.
Fumana ho eketsehileng ka tse ling tsa lintlha tsa bohlokoa leetong la rona la lipatlisiso.