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

Pregnancy and Childbirth

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

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)

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

Squamous cell carcinoma (SCC) and Epidermolysis Bullosa

(© St John’s Institute of Dermatology, Guys and St Thomas' Hospital)

Clinical Practice Guidelines

Completed Guidelines (Oral Heath Care, Wound Management, Pain Management, Cancer Management, Podiatry, Psychosocial and Clinical Procedures)

For more clinical publications please visit:

www.debra-international.org/epidermolysis-bullosa/eb-literature.html

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

Information sheets

• Advocacy
• New *Applying for Disability Living Allowance*
• Bereavement support
• EB Community Support and Healthcare
• Direct payments: care and support
• What are direct payments?
• Direct payments: a traffic light guide
• Education - starting or changing schools
• Education - college 
• The Equality Act (2010)
• Looking after your feet
• Swimming with EB
• Transferring to Personal Independence Payments (PIP)

Applying for Disability Living Allowance for children with EB

If your child has EB, they may be eligible for Disability Living Allowance, which is a benefit to help with extra costs arising from living with a condition or disability. You can download the form here. DLA is tax-free. You can claim even if you work or if your family has savings or money coming in.

Download our guide to applying for Disability Living Allowance.

Contact your DEBRA EB Community Support Manager or call 01344 771961 if you need assistance with the application or help filling out the form.

Back issues of In Touch

• 2019: October 
• 2018: Issue 3
• 2018: Issue 2
• 2018: Issue 1
• Spring 2017
• Autumn/Winter 2016

For further back issues please contact Alice Curtis

Policies

• Making a referral to the DEBRA EB Community Support team

Safeguarding Policy 

DEBRA actively promotes the welfare of children and vulnerable adults, ensuring that their health, development and well-being is not impaired or restricted and actively taking steps to protect them from harm where there are concerns about their welfare and safety.

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.

back to the top

back to community support