DEBRA tarihin kowane zamani

2017

• DEBRA UK tana ba da kuɗi don haɓakawa da aiwatar da su shirin horaswar podiatry na EB na farko a duniya
• DEBRA UK tana ba da kuɗi don Burtaniya ta farko cibiyar cututtuka da ba kasafai ba. Cibiyar, wadda ke a asibitin Guy da St Thomas, ita ce irinta ta farko a Birtaniya, kuma an samar da ita ne domin tallafa wa manya da yara da ke fama da cututtuka masu wuyar gaske, ciki har da EB, wadanda ke shafar gabobin jiki da dama. Cibiyar ta haɗu da ayyuka na ƙwararru da yawa a wuri ɗaya, adana lokaci da haɓaka ƙwarewar haƙuri ga mutanen da ke da kowane nau'in EB da sauran cututtukan da ba kasafai ba.
• DEBRA UK kudin shiga gwaji na farko na ɗan adam na gwajin cutar kansa na EB da aka yi niyya musamman don magance cututtukan daji da Recessive Dystrophic EB ke haifarwa

2020

• DEBRA UK ta kafa kuma ta karbi bakuncin EB2020 London, Babban taron EB na farko na duniya wanda ya haɗu da membobin ƙungiyar EB na duniya don raba gogewa da ra'ayoyi, sabbin fasahohi, da mafi kyawun aikin tunani don ƙarin tallafi da zaɓuɓɓukan magani ga mutanen da ke zaune tare da kowane nau'in EB

2022

• DEBRA UK ta ƙaddamar da mafi girman cikakken nazarin fahimtar haƙuri na EB tukuna. Hankali daga wannan binciken, wanda aka kammala a farkon 2023 sama da mambobi 300 na al'ummar EB, GPs 100, da likitocin fata 50, sun taimaka wajen tsara ayyukan agaji na gaba da ayyukan yakin neman zabe.
• Don ƙara wayar da kan jama'a game da EB da na DEBRA UK, ƙungiyar agaji ta sake yin alama da aka fitar a duk dukiyoyin gani da zaɓaɓɓun shagunan DEBRA UK. Alamar da aka wartsake ta haɗa da tsarin launi na zamani kuma an haɗa 'The Butterfly Skin Charity' a cikin tambarin DEBRA UK don fa'ida kan wayar da kai kan kalmar fata malam buɗe ido. Sabuwar alamar ta kuma haɗa da kiran sa hannu don yin aiki - 'Ka taimake mu mu dakatar da zafin EB'

2023

• Shirin sake dawo da miyagun ƙwayoyi na EB ya fara tare da farkon maganin EB na sake fasalin gwajin asibiti (Apremilast) DEBRA UK ta ba da izini. Wannan gwaji na asibiti zai iya haifar da ingantaccen magani na miyagun ƙwayoyi wanda ke rage alamun bayyanar cututtuka a cikin manya da yara masu fama da EBS mai tsanani.
• Birtaniya ta sami amincewar magani na farko na magani (Filsuvez®) don maganin raunukan kauri da ke hade da dystrophic da junctional EB. Membobin DEBRA UK sun ba da shaidar haƙuri wanda ke da mahimmanci don samun amincewar NICE na wannan magani
• Mataimakin shugaban DEBRA, Graeme Souness CBE da Team DEBRA sun yi iyo a tashar Turanci kuma sun tara sama da £ 1.5m don taimakawa wajen dakatar da ciwon EB.. Wannan aikin ya kuma taimaka ƙara wayar da kan jama'a game da EB daga 6% zuwa 10%*, da kuma wayar da kan DEBRA UK daga 17% zuwa 23%*. *Nazarin YouGov Yuli-23
• DEBRA UK ta saka hannun jari a cikin tallafin al'ummar EB ta hanyar samar da kudade don haɓaka ƙungiyar zuwa manajoji 10 da ke cikin Burtaniya wanda ke ba da damar ƙarin tallafi ga ƙarin membobin.
• DEBRA UK ta ƙaddamar da wani aiki tare da Helix, kwalejin Imperial London, don ƙarin fahimtar bukatun jama'ar EB da kuma tsara samfuran don haɓaka ayyukan yau da kullun / rayuwa tare da EB
• DEBRA UK ta ƙaddamar da haɗin gwiwa tare da Tolley Health Economics don haɓaka takamaiman bayanan tattalin arzikin kiwon lafiya na EB don tabbatar da shirye-shiryen aikace-aikacen jiyya na gaba zuwa NICE da samun damar NHS da biyan kuɗi.

2024

• DEBRA UK ta yi haɗin gwiwa tare da NHS Ingila don kamawa da nazarin bayanan kiwon lafiya daga marasa lafiya da ke zaune tare da kowane nau'in EB. Wannan muhimmin haɗin gwiwa na dogon lokaci zai taimaka ƙara fahimtar haɗin kai na EB ciki har da mita, yanayi, haddasawa da sakamakon nau'o'in EB da aka gada. Har ila yau, za ta tallafa wa masu bincike da masana'antun harhada magunguna da ke aiki a kan dalilin, rigakafi, ganewar asali, jiyya, da kuma kula da alamun EB, don inganta kulawa da haƙuri da sakamakon.
• Ƙungiyar Magunguna ta Scotland ta amince da Filsuvez® don maganin raunin kauri a tsakanin marasa lafiya da dystrophic da EB junctional a Scotland.
• DEBRA UK ta ba da izinin nazarin James Lind Alliance (JLA) don kowane nau'in EB, na farko daga ƙungiyar tallafawa marasa lafiya don wani yanayi mai wuya.. Nazarin JLA, wanda shine binciken duniya wanda DEBRA UK ke jagoranta, zai taimaka wajen gano mafi mahimmancin tambayoyin bincike da ba a amsa ba game da kowane nau'in EB kuma zai goyi bayan fifikon binciken EB na gaba.
• DEBRA UK ta yi haɗin gwiwa tare da Cibiyar Nazarin Ciwon daji ta Burtaniya Scotland don haɓaka samfuran ciwon daji na farko waɗanda zasu taimaka haɓaka fahimtar ci gaban ciwon fata a cikin marasa lafiya da ke zaune tare da recessive dystrophic epidermolysis bullosa
• Godiya ga kudade daga Geoff da Fiona Squire, DEBRA UK ta buɗe gidan hutu na 7th. Yanzu membobin DEBRA na Burtaniya za su iya samun damar hutu mai ƙarancin farashi a cikin kyawawan wurare shida a duk faɗin Burtaniya gami da gundumar Lake, Newquay, North Norfolk, North Wales, Poole, da Weymouth
• DEBRA UK ta bude sabbin shaguna a Lightwater, Trowbridge, Guildford, da South Queensferry
• DEBRA UK ta tallafawa jarin bincike sama da £22m - ta hanyar wannan binciken an gano manyan kwayoyin halittar da ke haifar da EB, an fara gwajin gwaji na ɗan adam, kuma manyan kamfanonin harhada magunguna yanzu suna saka hannun jari a cikin gwaje-gwajen duniya na yuwuwar jiyya don nau'ikan EB daban-daban. Har yanzu akwai abubuwa da yawa da ya kamata a yi amma tare za mu iya zama bambanci ga EB