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Liwebinars tsa Patlisiso le Bophelo bo Botle

Setšoantšo sa banner bakeng sa "Letoto la webinar la Patlisiso le Bophelo bo Botle" ka Debra, se shebaneng le lihlooho tse amanang le sechaba sa EB, le Q&A ea litsebi.

Letoto la rona la li-webinar tsa Patlisiso le Bophelo bo botle le tsamaisoa ke Motsamaisi oa Lipatlisiso oa UK oa DEBRA Ngaka Sagair Hussain mme o fana ka baeti ba fapaneng ba buang ba phela ka boiphihlelo ba bona ba lipatlisiso tsa EB le tlhokomelo ea bophelo bo botle. Linako tsena e tla ba menyetla e metle ea ho ithuta ka lihlooho tse fapaneng tse amanang le EB, le hore lipotso tsa hau li arajoe ke litsebi. Li bulehetse bohle 'me libui tsa rona li ikemiselitse ho sebelisa puo e hlakileng empa li tla fana ka monyetla oa ho utloisisa lipatlisiso tsa EB le tlhokomelo ea bophelo bo botle ka botebo.

Ingolise bakeng sa li-webinars tse tlang 'me u shebe lirekoto tsa liketsahalo tse fetileng tse ka tlase. 

 

Li-webinar lia hlaha

Eba le Ngaka Emma Chambers, mofuputsi le motlhatlheledi wa Queen Mary's University, London. 

Tloo ho tla mamela le ho botsa lipotso tsa hau mabapi le…

  • 'Lebotho la rona la baeloji' - lisele tsa sesole sa 'mele le liprotheine
  • Kamoo lisele tsa sesole sa 'mele le liprotheine li bakang ho ruruha letlalong la rona
  • Litlhare tse thibelang ho ruruha li ka sebetsa joang ho EB

Tse ling ka sebui sa moeti oa ketsahalo ena:

Dr Chambers ke ngaka ea mafu a mafu a thehiloeng Setsing sa Blizard sa Queen Mary University ea London. O ile a fuoa Oliver Thomas Mokhatlo oa EB ho ithuta hore na lithethefatsi tse seng li ntse li le teng tse thibelang ho ruruha li ka fokotsa marako a EB a bakoang ke liprotheine tsa tsamaiso ea 'mele ea ho itšireletsa mafung le lisele. 

Ngolisa bakeng sa Patlisiso ea rona ea December le Bophelo Webinar

 

 

Li-webinars tse fetileng

Eba le Ngaka Rob Hynds, Moithuti e Moholo oa Lipatlisiso Univesithing ea London. 

Shebella se rekotiloeng ho mamela lipotso mabapi le…

  • Mefuta e fapaneng ea EB e ka ama ho phefumoloha le matšoafo joang.
  • Kalafo ea lisele le liphatsa tsa lefutso eo Dr Hynds a sebetsang ho eona, le hore na e ka sebelisoa joang ho thusa batho ba nang le EB.
  • Sehlopha sa Dr Hynds se ntse se sebetsa ho thusa batho ba nang le EB ka phefumoloho ea bona. 

 

Tse ling ka sebui sa moeti oa ketsahalo ena:

Rob o koetlisitsoe e le setsebi sa baeloji ea lisele Univesithing ea Durham, University College London (UCL) le The Francis Crick Institute pele a theha sehlopha sa lipatlisiso sa EpiCENTR Setsing sa Zayed bakeng sa Lipatlisiso ka Mafu a Rare ho Bana ho UCL ka 2022. Sehlopha sa Rob se sebetsa haufi-ufi le dermatologists le lingaka tsa tsebe, nko le 'metso Sepetleleng sa Great Ormond Street ho etsa lipatlisiso ka mefuta ea EB e amang tsamaiso ea ho hema, le ho nts'etsapele liphekolo tse ncha tse ipapisitseng le lipatlisiso tsa kalafo ea lisele le liphatsa tsa lefutso.

 

Eba le Kathryn Moore, moeletsi oa liphatsa tsa lefutso ho Yorkshire Regional Genetic Service e thehiloeng Leeds.

Shebella se rekotiloeng ho mamela lipotso mabapi le…

  • Mekhoa ea lefa ea EB
  • Likhetho tsa tlhahlobo ea liphatsa tsa lefutso tsa batsoali pele ba ima
  • Tlhahlobo ea liphatsa tsa lefutso nakong ea bokhachane

 

Tse ling ka sebui sa moeti oa ketsahalo ena:

Kathryn e bile moeletsi oa liphatsa tsa lefutso lilemong tse 6 tse fetileng a sebetsa tlhahlobong ea liphatsa tsa lefutso pele ho pōpelo, mofetše, pelo le lefutso la bakhachane. O na le lengolo la Undergraduate in Medical Genetics ho tsoa Univesithing ea Leicester le Masters in Genetic Counseling ho tsoa Univesithing ea Sydney. Kamora ho ithuta Univesithing ea Sydney o qetile lilemo tse 'maloa a sebeletsa New South Wales Health e Australia pele a khutlela UK, ho Yorkshire Regional Genetic Service e thehiloeng Leeds. O fihletse ngoliso ea hae le Academy for Healthcare Science ho tloha ha a khutlela UK 'me esale a emela Baeletsi ba Liphatsa tsa lefutso ba bacha mosebetsing oa komiti ea Mokhatlo oa Mooki le Baeletsi ba Liphatsa tsa lefutso lilemong tse peli tse fetileng. E le karolo ea karolo ea hae, Kathryn o na le tšepo ea ho ntlafatsa temoho mabapi le likhetho tse fumanehang liphatseng tsa lefutso e le hore batho ka bomong le malapa ba ka etsa liqeto tse nang le tsebo mabapi le tlhokomelo ea bophelo bo botle ba malapa a bona.

 

Eba le Ngaka Su Lwin, ngaka ya letlalo le motlhatlheledi wa tlotlo kwa Setheong sa St John's sa Dermatology le King's College London. 

Shebella se rekotiloeng ho mamela lipotso mabapi le…

  • Mahlale a ka morao ho liphatsa tsa lefutso bakeng sa EB
  • Litlhare tsa stem cell li ka thusa matšoao a EB joang
  • Kamoo liphekolo tsena li sebetsang kateng

 

Tse ling ka sebui sa moeti oa ketsahalo ena:

Ngaka Lwin o na le boiphihlelo ba lilemo tse fetang 10 lipatlisisong tsa EB, haholoholo lefapheng la kalafo ea lefutso le lisele. O boetse o ikemiselitse ho ntšetsa pele thekiso ea lithethefatsi bakeng sa mefuta eohle ea EB. 

Ngolisa bakeng sa Patlisiso ea rona ea Pulungoana le Bophelo Webinar

lemoha ka kopo: Liwebinar tsa Lipatlisiso le Bophelo bo botle li hlophisitsoe ka tsela e fapaneng le liketsahalo tsa rona tse ling tsa Marang-rang kaha re tla be re rekota libui tsa baeti le lipuo. Bakeng sa ts'ireletso le ts'ireletso ea hau inthaneteng, u ke ke ua khona ho sebelisa kh'amera ea hau kapa ho qoqa ka kotloloho le ba bang teng.