EB education and support
Education and support is provided for communities and families living with Epidermolysis bullosa.
The EB team at can support families by
- assist GPs and local health care providers to manage care locally
- provide health care plans, and support for community therapy providers, schools and local services.
- onsite visits are organised to provide education to local schools, daycare, GP’s and maternity hospitals for families linked to our care
- video conferencing is also available for families or services around the NSW or ACT if travel is not possible.
Education for your local hospital
If you do not live within the network boundary, the EB nurse will liaise with your local hospital, provide education for their staff, and a site/home visit to help your local hospital to be able to support you with wound care.
We will remain in contact with your local hospital and support them with anything they need. You will also continue to attend our EB clinics and services for other areas of your EB care.
Home nursing service
We offer a Hospital in the Home (HITH) nursing service if you live within the catchment area for the network. We will support your family to learn to do wound care in your own home after a new diagnosis.
DEBRA Australia
DEBRA Australia offers advocacy, financial and emotional support and networking opportunities to families who are living with EB.
Read the DEBA wound care information for families