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NHS specialist EB Healthcare

We work in partnership with the NHS and other organisations to ensure that people with EB in the UK get the healthcare and wellbeing support they need.
In 2008 we partnered with the NHS to set up the National Specialised Commissioning Group (NSCG) to oversee the provision of specialist healthcare for people with all types of EB in the UK. Today the NHS provides a world-class EB healthcare service through four specialist EB healthcare centres and the Scottish EB health service. And in 2017 we provided co-funding for the Rare Disease Centre, a first of its kind facility at St.Thomas’ Hospital in London which provides specialist healthcare support for adults and children with complex rare genetic diseases, including EB.
Throughout our history we have and continue to invest in initiatives with the objective of improving patient outcomes for people living with EB. From the establishment of specialist podiatry services and the development of an accredited podiatry course to clinical and research fellows, we continue to explore possibilities and partnerships that will benefit our members and the wider EB community today and in the future.
How we work to enhance healthcare and wellbeing support for the EB community
Për profesionistët
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We provide grants for funding specialist equipment needed by the EB healthcare centres, in-patient support grants to help members with some of the daily costs associated with hospital stays, and member grants for urgent and essential equipment
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We support the development of clinical practice guidelines (CPGs) which provide a set of recommendations for EB clinical care based on evidence gained from medical science and expert opinion. We also provide patient versions
- We have partnered with NHS England to analyse EB patient data, and we will use the results to provide clear facts and figures to clinicians/GPs, patients and their carers, government, and the public, to help increase understanding and secure the support we need
For people living with EB
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Vizioni i Ekipi i Mbështetjes së Komunitetit EB provides information, guidance and advocacy for people living with EB, their families and carers through clinics, events, on-line appointments, and Monday to Friday 9am to 5pm through the EB Information and Enquires phone line
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We offer our members 24/7 mental health support on-line, and depending on the specific circumstances, we offer specialist mental health counselling sessions
- We provide respite opportunities for our members and their families through our shtëpitë e pushimeve
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We enable our members to connect with one another through a range of in-person and online events
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Ne Sigurimi mbështetje për humbjen for our members
For all the EB community
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Our EB Community Support Managers can accompany, and support our members and the EB healthcare teams at regional and outreach clinics
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We connect our members with experts from the fields of Research and Health through our webinar series providing the opportunity to learn about different health and research topics relating to EB, and have questions answered by the experts
Specialistët e EB
Detajet e kontaktit për katër qendrat e ekselencës EB në MB janë renditur më poshtë (treguar me një yll*), si dhe spitale të tjera ku ndodhen specialistët e EB. Ne do të shtojmë më shumë në këtë listë, kështu që nëse spitali juaj nuk është i listuar, por ju dëshironi ndihmë për të kontaktuar një ekip të kujdesit shëndetësor, ju lutemi kontaktoni me ekipi ynë. Ne gjithashtu mund të ndihmojmë me referime ose të kuptojmë se cili ekip i kujdesit shëndetësor është më i përshtatshëm për rrethanat tuaja individuale.
Plumbi klinik
Malobi Ogboli
Email: malobi.ogboli@bch.nhs.uk
Ekipi EB
Telefon: 0121 3338757/8224 (përmendni se fëmija ka EB)
Email: eb.team@nhs.net
Tabela komerciale: 0121 333 9999
Webfaqja: https://bwc.nhs.uk/epidermolysis-bullosa
Ekipi EB
Sharon Fisher, infermiere klinike pediatrike EB:
Telefon: 07930 854944,
Email: sharon.fisher@ggc.scot.nhs.uk
Kirsty Walker, infermiere dermatologjike:
Telefon: 07815 029269
Email: kirsty.walker@ggc.scot.nhs.uk
Dr Catherine Juria, Konsulent Dermatologjik:
Telefon: 0141 451 6596
komutator: 0141 201 0000
Webfaqja: nhsggc.org.uk
Ekipi EB
Dr Catherine Juria, Konsulent Dermatologjik:
Telefon: 0141 4516596
Susan Herron, asistente EB Business Support:
Telefon: 0141 201 6447
Email: susan.herron@ggc.scot.nhs.uk
komutator (A&E): 0141 414 6528
Webfaqja: https://bwc.nhs.uk/epidermolysis-bullosa
Plumbi klinik
Dr Anna Martinez
Ekipi EB
Telefon: 0207 829 7808
Email: eb.nurses@gosh.nhs.uk
komutator: 0207 405 9200
Webfaqja: https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/epidermolysis-bullosa/
Konsulentët EB
- Profesoresha Jemima Mellerio
- Profesor John McGrath
- Dr Danielle Greenblatt
Klinikat mbahen në Qendrën e Sëmundjeve të Rralla, kati 1, Krahu Jugor, Spitali St Thomas', Westminster Bridge Road, Londër SE1 7EH.
Administratori i EB
Telefon: 020 7188 0843
Pritja në Qendrën e Sëmundjeve të Rralla
Telefon: 020 7188 7188 zgjerimi 55070
Email: gst-tr.dermatologjireferralsEB@nhs.net
Faqja e internetit: https://www.guysandstthomas.nhs.uk/our-services/adult-epidermolysis-bullosa-eb
Ekipi EB
Telefon: 0121 424 5232
Email: ebteam@uhb.nhs.uk
komutator: 0121 424 2000
Webfaqja: https://www.uhb.nhs.uk/services/dermatology/dermatology-services.htm