Epidermolysis bullosa, Sydney Children's Hospital, Randwick
Contact
Phone: (02) 9382 5563 or (02) 9382 2222
About our service
Epidermolysis bullosa (EB) causes the skin to be fragile and to blister easily. Tears, sores, and blisters in the skin happen when something rubs or bumps the skin. They can appear anywhere on the body
You cannot catch EB, it is genetically inherited. people with epidermolysis bullosa are sometimes known as 'cotton wool babies'. EB can affect a child’s skin as well as internal organs. This means they require complex care over a long period of time and access to screening and preventative education as they grow older.
The Epidermolysis bullosa service is for paediatric patients across NSW and the ACT and includes comprehensive admissions from birth to adult care.
We provide monthly clinics and support for children with EB and short day admissions on the medical day unit if required.
We also liaise with your family, doctor, local services and schools to coordinate appropriate EB care and educational support. This can be done through visits or via teleconferences.
Referral process for clinicians
Our department is using Consultmed to manage referrals. The Consultmed platform allows health professionals to send e-referrals to us securely.
Consultmed questions and technical support: helpdesk@consultmed.co
Referral and appointment process for parents and carers
Request a referral
To make an appointment at our clinic, you will need a referral from your GP, paediatrician or specialist.
They will assess your child, discuss your concerns, and make a referral to the appropriate service.
Track your referral
Our department uses Consultmed to manage referrals. Your referring clinician sends the e-referral to us using the secure Consultmed platform.
Once we receive the referral, we will send you an email with your tracking information. We will update you as we process the referral and book your appointment.
To receive these updates, please ask your referring clinician to include your email on the referral.
If your clinician has questions about Consultmed or require technical support, they can contact helpdesk@consultmed.co.
Need support?
If you need help or have questions about the referral and appointment process, please contact us.
Phone: (02) 9382 5563 or (02) 9382 2222
Clinic information
The rare disease approach to care
The Epidermolysis bullosa (EB) clinic team contributes to research, clinical practice guidelines, and educational resources.
The Rare disease approach to care means that we consider the difficulties you may have had reaching a diagnosis, finding a health professional in your area who understands EB care, and the emotional toll that managing a rare disease in the early months of life can take on the family.
All families who receive care through the clinic service have access to an individualised care coordination plan. We will work with you to determine what resources you have in your area, screening procedures your child may need, and educational support your local health care providers and schools require to best support your child.
Your care coordination plan includes contact lists, appointment schedules and education. It is used as a resource tool and can be presented to your local health care provider to help them understand the preventative care your child may require during clinical procedures.
The clinic also closely with regional hospitals to provide appropriate EB pregnancy, labour and postnatal care for pregnant women as well as for families where a newborn EB diagnosis is suspected.
