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Tasirin binciken mu

Isla, wacce ke zaune tare da recessive dystrophic epidermolysis bullosa (RDEB), tana wasa da kare ta.
Isla, wanda ke zaune tare da recessive dystrophic epidermolysis bullosa (RDEB).

"Abin da nake fata don binciken EB shine a sa abin da ya taɓa yiwuwa, mai yiwuwa. Ina son kyakkyawar makoma ga Isla; Ina son magani ya faru a rayuwarta.”

Andy da Isla, Membobin DEBRA

Rahoton tasirin binciken mu

Anan a DEBRA UK, burin Andy & Isla suma burin mu ne. Ta hanyar zazzage kwafin ku na Rahoton Tasirin Bincike na DEBRA UK 2021, zaku iya sanin tasirin tasirin. epidermolysis bullosa (EB) akan rayuwar dubban yara, maza da mata na Burtaniya yayin da masu binciken EB ke ƙoƙarin neman magani.

gano:

  • Iyalin mutanen da wannan cuta ta fata ta shafa;
  • Kyakkyawan ra'ayinmu game da makomar kyauta daga EB;
  • ƙwararrun kiwon lafiya da sabis da ake samu ga majiyyatan EB da iyalai;
  • Ƙaddamar da ingantaccen bincike a madadin marasa lafiya da iyalai na EB;
  • Kuma more. 

Zazzage rahoton tasirin mu na 2021

SAUKAR DA Rahoton Tasirin EBS

 

Yarda da kudade daga DEBRA UK:

Lokacin gabatarwa ko buga sakamakon, kuɗin daga DEBRA UK yakamata a yarda da ita ta amfani da tambarin mu da kalmomin: 

'Kudade don – lambar kyauta An samu daga DEBRA UK.'

Babban mai binciken ya kamata ya aika pdf na duk takaddun da aka buga, ƙaddamar da rubuce-rubucen rubuce-rubuce da taƙaitaccen taro game da Aikin zuwa DEBRA UK a duk lokacin tallafin da kuma shekaru biyar bayan an ƙare tallafin. Za a jera wallafe-wallafe a ƙasa:

Bugawa da aka samo daga tallafin DEBRA UK

DEBRA UK Project Buga na kimiyya Labarin yaren bayyananne

KEB da kansar fata (2024)

Haɗin Kindlin-1 a cikin ƙwayar ƙwayar ƙwayar ƙwayar ƙwayar cuta  

Binciken Alamun PEBLES RDEB (2022)

Pain a cikin recessive dystrophic epidermolysis bullosa (RDEB): binciken da ake yi na Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES) Jin zafi na kowa, amma mai wuyar sarrafawa, a cikin RDEB: nazari

Jiyya na dindindin na RDEB

Maganin gyaran kwayoyin halitta na Topical ta amfani da nanoparticles na lipid: 'cream gene' don cututtukan fata na kwayoyin halitta? 'Gene creams' don cututtukan kwayoyin halitta

Jiyya na dindindin na RDEB

Lipid Nanoparticles da kyau Isar da Babban Editan ABE8e don Gyaran COL7A1 a cikin Dystrophic Epidermolysis Bullosa Fibroblasts A cikin Vitro  

Skin microbiome na kowane nau'in EB (2023)

Warkar da rauni a kowane nau'in EB (2023)

Daidaitawar Genotype-phenotype a cikin Junctional Epidermolysis Bullosa: alamomi zuwa tsanani Maye gurbi na musamman na JEB sun bayyana bambancin yanayin asibiti, binciken ya nuna
Fahimtar cututtukan iska a cikin JEB (2023) Na LAMA3 da LAMB3: Wani sabon labari na maganin ƙwayar cuta don epidermolysis bullosa (Sharhi akan aikin da aka buga a cikin 2024)  
Fahimtar cututtukan iska a cikin JEB (2023) Maganar Lentiviral na wildtype LAMA3A yana mayar da mannewar tantanin halitta a cikin ƙwayoyin basal na iska daga yara masu epidermolysis bullosa Hanyar maganin kwayar halitta da kwayar halitta tana nuna alkawari ga yaran EB
Tabo a cikin RDEB (2023) Gamma-Secretase Inhibitors Suna Rage Hanyar Siginar Profibrotic NOTCH a cikin Ragewar Dystrophic Epidermolysis Bullosa Toshe hanyar siginar NOTCH na iya sauƙaƙe RDEB tabo: Nazari
DEBRA UK Project Buga na kimiyya
Kwayoyin tsarin rigakafi da RDEB raunuka (2022) Matsayin mTOR Signaling Cascade a cikin Epidermal Morphogenesis da Samuwar Barrier Skin
Tafiya tare da EBS (2022) P35: Canje-canje na sojojin da aka yi amfani da su a ƙarƙashin ƙafafu a cikin marasa lafiya da epidermolysis bullosa simplex yayin tafiya

Tafiya tare da EBS (2022)

Warkar da rauni a kowane nau'in EB (2023)

488 Ground reaction Forces (GRF) a cikin marasa lafiya da epidermolysis bullosa simplex (EBS) yayin tafiya
Fesa akan jigon halittar RDEB (2022) Bita na yau da kullun na haɗin gwiwar genotype-phenotype na yawan jama'a a cikin recessive dystrophic epidermolysis bullosa (RDEB)
Fesa akan jigon halittar RDEB (2022) Maidowa nau'in VII collagen a cikin fata
Maganin Cannabinoid don duk EB zafi da ƙaiƙayi Nazarin C4EB-Transvamix (10% THC / 5% CBD) don kula da ciwo na kullum a cikin epidermolysis bullosa: ka'idar don bazuwar bazuwar, placebo sarrafawa, da kuma makafi biyu binciken crossover.
Warkar da rauni a kowane nau'in EB (2023) Matsakaicin autosomal recessive epidermolysis bullosa simplex wanda ya taso daga sabon maye gurbi na homozygous frameshift a cikin DST (BPAG1)
Warkar da rauni a kowane nau'in EB (2023) P17: Shirye-shiryen kulawa na wucin gadi a cikin epidermolysis bullosa: samfuri don faɗuwar dermatology
Warkar da rauni a kowane nau'in EB (2023) BG11: Scratch the ocular surface: bita na baya-bayan nan na bayyanar ophthalmological a cikin epidermolysis bullosa
Warkar da rauni a kowane nau'in EB (2023) BG12: Cicatricial junctional epidermolysis bullosa: wani subtype da aka manta
Warkar da rauni a kowane nau'in EB (2023) LB978 Babban dangi mai yawa na bacillales yana da alaƙa da epidermolysis bullosa (EB) a matakai daban-daban na warkar da rauni.
Warkar da rauni a kowane nau'in EB (2023) P33: Masu tasiri a cikin epidermolysis bullosa: ƙwayar cutaneous microbiome

 

DEBRA UK Project Buga na kimiyya Labarin yaren bayyananne
Yin maganin ƙaiƙayi na DEB tare da ƙananan ƙwayoyin cuta (2022) Yawaitu, ilimin halittar jiki da sarrafa ƙaiƙayi a cikin epidermolysis bullosa  
Yin maganin ƙaiƙayi na DEB tare da ƙananan ƙwayoyin cuta (2022) Fahimtar bayanan da aka rubuta na recessive dystrophic epidermolysis bullosa fata rauni yana nuna damar sake dawo da miyagun ƙwayoyi don inganta warkar da rauni. Methotrexate na iya taimakawa wajen warkar da fata a RDEB, binciken ya nuna
Kwayoyin tsarin rigakafi da RDEB raunuka (2022) Ƙa'idar Amsa Warkar da Rauni yayin Tsufa  
Kwayoyin tsarin rigakafi da RDEB raunuka (2022) Mitochondrial metabolism yana daidaita matakan ƙayyadaddun matakan gyare-gyare a cikin macrophages yayin warkar da rauni  
Maganin fesa baki/maƙogwaro (2022) Low Acyl Gellan a matsayin Excipient don Inganta Sprayability da Mucoadhesion na Iota Carrageenan a cikin Nasal Spray don Hana Kamuwa da SARS-CoV-2  
Fesa akan jigon halittar RDEB (2022) Yiwuwar maganin kwayoyin halitta don recessive dystrophic epidermolysis bullosa  

Mayar da magungunan hana tabo a cikin RDEB

Tabo a cikin RDEB (2024)

Ƙididdiga ilimi akan hanyoyin ƙwayoyin ƙwayoyin cuta na fata fibrosis: mayar da hankali kan hanyar siginar Notch mai yawa.  
Warkar da rauni a kowane nau'in EB (2023) Gano cututtukan fata na kwayoyin halitta  
Warkar da rauni a kowane nau'in EB (2023) P45: Mai kyau, mara kyau da mara kyau: kumburi a cikin epidermolysis bullosa raunuka  
Warkar da rauni a kowane nau'in EB (2023) BG08: JEBseq: wani labari ne na bayanai don gano alaƙar genotype-phenotype a cikin junctional epidermolysis bullosa

 

Za mu so mu ji daga wurin ku!

Muna son jin muryoyin iyalai da ke zaune tare da EB don taimaka mana yanke shawarar ayyukan bincike da za mu bayar.

Idan kuna son sanar da mu ra'ayoyinku game da bincikenmu ko kuma za ku yi farin cikin tuntuɓar ku don neman ra'ayin ku kan irin binciken da muke bayarwa, don Allah shiga.