National Neonatal Epidermolysis Bullosa (EB) Boxes
The National Neonatal Epidermolysis Bullosa (EB) boxes are an initiative between Mölnlycke Health Care, BrightSky Australia and DEBRA Australia (Dystrophic Epidermolysis Bullosa Research Association). The aim of this initiative is to provide best practice information, education and resources to those clinicians who are looking after a newborn baby with suspected EB. Early information, education and early use of best practice dressings, is imperative for better health outcomes for the baby. Supply of these EB boxes ensures appropriate care is provided therefore reducing trauma that may be experienced from inappropriate dressings use. They also provide a consistent approach to newborn management of EB cases around Australia.
Transfer of a baby with moderate/severe EB to a centre of expertise will often be the choice of the neonatologist or paediatrician. However, immediate transfer is not always possible, and movement/transfer can cause further trauma. The information and materials in this box will help to provide safe, best practice care in the interim.
BrightSky Australia is a not–for–profit organisation which provides health care products to consumers Australia-wide. BrightSky Australia is the administrator of the National EB Dressings Scheme on behalf of the Australian Government. A Clinical Nurse Consultant is employed to educate in best practice of wound care and dressing application. www.ebdressings.com.au or email email@example.com.
DEBRA Australia offers advocacy, financial support, emotional support and networking opportunities to individuals, families and professionals who are living and working with EB. Ensuring all research and best practice treatments are investigated leading to improved quality of life for all. DEBRA Australia also uses donations to fund local and international research into a cure for EB and provide much needed services. Their aim is to work for a life free of pain. If you would like to know more about DEBRA please visit the website www.debra.org.au or contact firstname.lastname@example.org.
How to take a biopsy
Please refer to the following website: http://blisters.org.au/
To download a copy of Recommended Care of Neonates with Suspected EB: click here
Contact list for Expertise/Knowledge
|Queensland||Royal Children’s Hospital, EB Clinic (Burns outpatient Unit), Brisbane||DEBRA EB Nurse, Samantha Hay||(07) 3636 9119
0458 937 000
|NSW||University of New South Wales School of Medicine, St George Hospital||Professor and Head of Dermatology – St George Hospital, Dedee F Murrell||
(02) 9113 1111 (Hospital)
(02) 9113 2543 (Prof Murrell Office)
|Sydney Children’s Hospital, EB Clinic, Randwick Sydney, NSW.||EB Clinical Nurse Consultant||(02) 9382 0389 Pager 46562 via Switch:(02) 9382 1111.|
(02) 9382 1111
|The National EB Dressing Scheme, BrightSky Australia, Sydney, NSW||EB Dressing Scheme Clinical Nurse Consultant||1300 290 400|
|Victoria||Royal Children’s Hospital, EB Clinic, Melbourne||Dermatology Nurse Practitioner||(03) 9345 4803|
|DEBRA EB Nurse Consultant||0427 937 699 or via Switchboard:(03) 9345 5522|
|South Australia||Women’s & Children’s Hospital, North Adelaide||Lisa Naeher – Stoma/Wound/ Urology Clinical Practice Consultant||(08) 8161 7000|
|Head of Dermatology, Dr Lachlan Warren|
|Western Australia||Princess Margaret Hospital for Children, Perth||Narissa Wieland / Carmel Boylan – Clinical Nurse Consultants||(08) 9340 8584|
|Dr Anne Halbert||(08) 9340 8222|
To download a copy of the Mission Statement: click here