We work in partnership with the NHS to deliver an enhanced EB healthcare service which is vital for people living with EB. There are four designated EB centres of excellence around the UK providing expert specialist EB healthcare and support, as well as other hospital locations and regular clinics which aim to provide EB services to people wherever they are located. 

Teams consisting of DEBRA community support managers, consultants, EB leads, nurses and other specialist healthcare professionals provide a multidisciplinary approach to care with high levels of expertise.

Some of the specialist EB healthcare teams are located in the following hospitals: 

Children's services

Birmingham Women's and Children's Hospital

Glasgow Royal Hospital for Children

Great Ormond Street Children's Hospital

 

Adult services

Glasgow Royal Infirmary

Guy's and St Thomas' Hospital

Solihull Hospital

 

Funding specialist healthcare

We provide funding that enables specialist healthcare teams to take on additional work that benefits people living with EB, including:

• nutrition - funding towards EB dietitian services, working jointly with clinical teams to provide specialist nutritional advice to people living with EB to improve their general health and wellbeing, aid vital wound-healing and boost immunity
• podiatry - funding specialist podiatry clinics and equipping people with information on how to manage and limit blistering. We have also funded the development of an accredited 'EB skills for podiatrists' training course, with the aim of making this available online and in-person
• outreach - supporting multidisciplinary outreach clinics enabling people with EB to receive specialist care closer to home. We also support training within the local healthcare service to increase EB service coverage throughout the UK
• bereavement support - providing practical and emotional support to families after the death of a family member with EB
• raising awareness of EB in the wider community – specialist EB nurses are able to spend time raising awareness in schools, colleges and workplaces, as well as providing specialist EB training courses, attending conferences, exhibitions and other events
• research – our funding enables the specialist EB nurses to conduct or assist with important research projects. The contribution of the EB healthcare teams in this area is vital to developing effective treatments, and ultimately, finding a cure for EB. Find out more about our research strategy
• product development and evaluation – our funding enables healthcare professionals to conduct vital product evaluation trials and develop products specific to the needs of the EB community, which might not otherwise be available
• publications – we work closely with the specialist EB healthcare teams to ensure there is a diverse range of publications and materials available, including funding the development national and international guidelines for people living with EB and for professionals. These guidelines provide high-quality, detailed, authoritative and reliable information
• training – our support ensures that the specialist EB nurses are able to share their knowledge and expertise with others living and working with EB, including carers and other healthcare professionals, so that the best possible care will always be available.

 

EB Specialists

Contact details for the four EB centres of excellence in the UK are listed below (indicated with an asterisk*), as well as other hospitals where EB specialists are located. We will be adding more to this list so if your hospital isn't listed but you would like help contacting a healthcare team, please get in touch with our team. We can also help with referrals or understanding which healthcare team is most suitable for your individual circumstances.

 

*Birmingham Women's and Children's Hospital

Department	Telephone	Email or website
EB team	0121 333 8757/8224 (mention that the child has EB)	[email protected]
Switchboard	0121 333 9999	bwc.nhs.uk

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Glasgow Royal Hospital for Children

Department	Telephone	Email or website
EB team	07930 854944	[email protected]
Switchboard	0141 201 0000	nhsggc.org.uk

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Glasgow Royal Infirmary

Department	Telephone	Email or website
EB team	-	Nurse position currently vacant
EB team (Business Support)	0141 201 6447	[email protected]
Switchboard (A&E)	0141 414 6528	nhsggc.org.uk

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*Great Ormond Street Children's Hospital

Department	Telephone	Email or website
EB team	0207 829 7808	[email protected]
Switchboard	0207 405 9200	gosh.nhs.uk

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*Guy's and St Thomas' Hospital

EB administrator: 020 7188 0843

Rare Diseases Centre reception: 020 7188 7188 extension 55070

Email: [email protected]

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

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*Solihull Hospital

Department	Telephone	Email or website
EB team	0121 424 5232	[email protected]
Switchboard	0121 424 2000	hgs.uhb.nhs.uk/solihull-hospital

 

 

 

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