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Information and publications

Information and publications

DEBRA produces a range of high quality booklets designed to give anybody living with EB, including individuals, families and carers, reliable information.

Working closely with specialist EB nurses and the NHS, a widespread review of all publications is currently underway to make them all easily available online, at which stage they will be added to the list below.

In the meantime, hard copies of booklets are available from the DEBRA office. Download a full list here and email it to membership@debra.org.uk to request your copies. There is no charge for literature, but a contribution towards production costs and postage (suggested donation £2.50 for up to three publications) will enable DEBRA to continue its vital educational work.

What is EB?

(Infographic created by FIENDISH.com)

How the EB Community Support Team can help you 

Care of a new baby with EB

EB Simplex localised and generalised types

(© GOSH NHS Foundation Trust. Compiled by the Clinical Nurse Specialist for Epidermolysis Bullosa and DEBRA in collaboration with the Child and Family Information Group at GOSH)

EB Simplex Dowling Meara

(© GOSH NHS Foundation Trust. Compiled by the Clinical Nurse Specialist for Epidermolysis Bullosa and DEBRA in collaboration with the Child and Family Information Group at GOSH)

Mild Dystrophic EB

(© GOSH NHS Foundation Trust. Compiled by the Clinical Nurse Specialist for Epidermolysis Bullosa and DEBRA in collaboration with the Child and Family Information Group at GOSH)

Nutrition for babies with EB

Nutrition for children over 1 year of age

Skin and Wound Care  in EB

EB for Parents, Schools and Playgroups

Recommendations for Children with EB in Schools (for Education Staff)

(© Birmingham Children's Hospital NHS Trust, available here by kind permission of the Birmingham Children's Hospital Occupational Therapy Team)

Oral Care in EB

(available through the DEBRA International website)

Acral Peeling Skin Syndrome

(© Birmingham Children's Hospital NHS Trust, available here by kind permission of the Birmingham Children's Hospital EB Nursing Team and Birmingham Children's Hospital Family Health Information Centre)

Kindler Syndrome

(© Birmingham Children's Hospital NHS Trust, available here by kind permission of the Birmingham Children's Hospital EB Nursing Team and Birmingham Children's Hospital Family Health Information Centre)

EB: My Story - Young People Talk

 For publications designed for healthcare professionals working with EB please click here.

Direct payments

Back issues of In Touch

DISCLAIMER
The information on this website is not intended to replace professional health advice. The information is provided for informational purposes only. Although every reasonable effort has been made to ensure that the information on this website was accurate at the time of publication, we accept no responsibility for any errors, omissions or misleading statements on this site or on any site which you may be able to access through a link on this site.

The use or distribution of the information on www.debra.org.uk is at the sole discretion of the user or any subsequent third party and DEBRA does not take any responsibility for such use or consequences.

Josh's story

Josh's story

DEBRA has been able to support the family by helping towards the provision of an electric wheelchair to give Josh the independence he craves.

READ HIS STORY

Become a member

Become a member

Membership is free and includes:

  • Access to DEBRA literature
  • FREE seasonal newsletter
  • Invitations to Members’ Day
  • Use of DEBRA holiday homes

Join now