Katswiri wazachipatala

Timagwira ntchito mogwirizana ndi a NHS kuti tipereke chithandizo chamankhwala cha EB chomwe chili chofunikira kwa anthu kukhala ndi EB. Pali malo anayi osankhidwa a EB ochita bwino ku UK opereka chithandizo ndi chithandizo cha akatswiri a EB, komanso malo ena azachipatala ndi zipatala zokhazikika zomwe cholinga chake ndikupereka chithandizo cha EB kwa anthu kulikonse komwe ali.

Magulu opangidwa ndi Oyang'anira othandizira ammudzi a DEBRA, alangizi, otsogolera a EB, anamwino ndi akatswiri ena azachipatala amapereka njira zosiyanasiyana zothandizira chisamaliro ndi luso lapamwamba.

Ena mwa akatswiri azachipatala a EB ali m'zipatala zotsatirazi:

Ntchito za ana

Chipatala cha Amayi ndi Ana cha Birmingham

Glasgow Royal Hospital for Children

Chipatala cha Ana cha Great Ormond Street

Ntchito zazikulu

Glasgow Royal Chipatala

Guy's ndi St Thomas' Hospital

Chipatala cha Solihull

Kupereka ndalama kwa akatswiri azaumoyo

Timapereka ndalama zomwe zimathandizira magulu apadera azachipatala kuti agwire ntchito zina zomwe zimapindulitsa anthu omwe ali ndi EB, kuphatikiza:

zakudya - thandizo lazakudya za EB, kugwira ntchito limodzi ndi magulu azachipatala kuti apereke upangiri wapadera wazakudya kwa anthu omwe ali ndi EB kuti akhale ndi thanzi labwino komanso kukhala ndi thanzi labwino, kuchiritsa mabala ndikuwonjezera chitetezo chokwanira.
kupembedza mafano - kupereka ndalama ku zipatala zachipatala zachipatala komanso kupatsa anthu chidziwitso cha momwe angasamalire ndi kuchepetsa matuza. Taperekanso ndalama zopangira luso lovomerezeka la 'EB la akatswiri oyendetsa miyendo'. maphunziro, ndi cholinga chopangitsa kuti izi zizipezeka pa intaneti komanso pamasom'pamaso
kufikira - kuthandizira zipatala zamitundu yosiyanasiyana zomwe zimathandiza anthu omwe ali ndi EB kulandira chisamaliro chapadera pafupi ndi kwawo. Timathandiziranso maphunziro mkati mwa ntchito zachipatala kuti awonjezere chithandizo cha EB ku UK
chithandizo chamankhwala - kupereka chithandizo chothandiza komanso chamalingaliro kwa mabanja pambuyo pa imfa ya wachibale yemwe ali ndi EB
kukulitsa chidziwitso cha EB m'madera ambiri - anamwino apadera a EB amatha kuthera nthawi yodziwitsa anthu m'masukulu, makoleji ndi malo ogwira ntchito, komanso kupereka maphunziro apadera a EB, kupezeka pamisonkhano, ziwonetsero ndi zochitika zina.
kafukufuku - ndalama zathu zimathandiza anamwino a EB kuti azichita kapena kuthandiza ndi ntchito zofufuza zofunika. Zothandizira zamagulu azachipatala a EB m'derali ndizofunikira kuti pakhale chithandizo chamankhwala, ndipo pamapeto pake, kupeza chithandizo cha EB. Dziwani zambiri za wathu kafukufuku njira
chitukuko ndi kuwunika kwazinthu - ndalama zathu zimathandizira akatswiri azachipatala kuchita mayeso ofunikira owunika ndikukulitsa mankhwala okhudzana ndi zosowa za gulu la EB, zomwe mwina sizingakhalepo
mabuku - timagwira ntchito limodzi ndi akatswiri azachipatala a EB kuti tiwonetsetse kuti pali zofalitsa ndi zida zosiyanasiyana zomwe zilipo, kuphatikiza ndalama zothandizira chitukuko ndi malangizo apadziko lonse lapansi kwa anthu okhala ndi EB ndi akatswiri. Malangizowa amapereka chidziwitso chapamwamba, chatsatanetsatane, chovomerezeka komanso chodalirika
maphunziro - Thandizo lathu limatsimikizira kuti akatswiri a EB anamwino amatha kugawana nzeru zawo ndi luso lawo ndi ena omwe akukhala ndi kugwira ntchito ndi EB, kuphatikizapo osamalira ndi akatswiri ena azaumoyo, kuti chithandizo chabwino kwambiri chikhalepo nthawi zonse.

Akatswiri a EB

Zambiri zolumikizirana ndi malo anayi apamwamba a EB ku UK zalembedwa pansipa (zowonetsedwa ndi nyenyezi *), komanso zipatala zina komwe akatswiri a EB ali. Tikuwonjezera zambiri pamndandandawu ngati chipatala chanu sichinatchulidwe koma mungafune kuthandizidwa kulumikizana ndi gulu lazaumoyo, chonde lemberani gulu lathu. Titha kukuthandizaninso potumiza anthu kapena kumvetsetsa kuti ndi gulu liti lazaumoyo lomwe lingagwirizane ndi zochitika zanu.

*Chipatala cha Amayi ndi Ana cha Birmingham

Dipatimenti	telefoni	Imelo kapena tsamba lawebusayiti
Timu ya EB	0121 / 333 (tchulani kuti mwana ali ndi EB)	[imelo ndiotetezedwa]
Sintha	0121 333 9999	bwc.nhs.uk

> Bwererani pamwamba

Glasgow Royal Hospital for Children

Dipatimenti	Lumikizanani	telefoni	Imelo kapena tsamba lawebusayiti
Timu ya EB	Sharon Fisher - EB Pediatric Clinical Namwino	07930 854944	[imelo ndiotetezedwa]
	Kirsty Walker - Namwino wa Dermatology	07815 029269	[imelo ndiotetezedwa]
	Dr Catherine Jury - Wothandizira Dermatology	0141 451 6596
Sintha		0141 201 0000	nhsggc.org.uk

> Bwererani pamwamba

Glasgow Royal Chipatala

Dipatimenti	Lumikizanani	telefoni	Imelo kapena tsamba lawebusayiti
Timu ya EB	Dr Catherine Jury - Wothandizira Dermatology	0141 201 6454
	Susan Herron - EB Business Support Assistant	0141 201 6447	[imelo ndiotetezedwa]
Switchboard (A&E)		0141 414 6528	nhsggc.org.uk

> Bwererani pamwamba

*Chipatala cha Ana cha Great Ormond Street

Dipatimenti	telefoni	Imelo kapena tsamba lawebusayiti
Timu ya EB	0207 829 7808	[imelo ndiotetezedwa]
Sintha	0207 405 9200	gosh.nhs.uk

> Bwererani pamwamba

*Guy's ndi St Thomas' Hospital

Mtsogoleri wa EB: 020 7188 0843

Kulandila kwa Rare Diseases Center: 020 7188 7188 kuwonjezera 55070

Email: [imelo ndiotetezedwa]

Address: Rare Diseases Center, 1st floor, South Wing, Chipatala cha St Thomas ', Westminster Bridge Road, London SE1 7EH

> Bwererani pamwamba

*Chipatala cha Solihull

Dipatimenti	telefoni	Imelo kapena tsamba lawebusayiti
Timu ya EB	0121 424 5232	[imelo ndiotetezedwa]
Sintha	0121 424 2000	hgs.uhb.nhs.uk/solihull-hospital

> Bwererani pamwamba pa tsamba

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