EB Dressing Scheme & EB Nurses

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A National EB Dressings Scheme – FINALLY!

Josh Gibson with the supplies he has received from the EB Dressings Scheme

After years of lobbying the government, finally success! In its last budget for 2009-2010, the Australian Federal Government pledged $16.4m over four years to establish a National EB Dressing Scheme. This scheme allows access to costly and necessary dressings to people with EB, which they normally would have had to completely fund themselves, sometimes costing thousands of dollars a month.

The scheme will be administered by BrightSky Australia.

To learn more about the scheme and find out whether you are eligible to receive dressings, visit BrightSky Australia’s National Epidermolysis Bullosa Dressing Scheme website http://www.ebdressings.com.au

For more information, visit the Department of Health and Ageing website http://www.health.gov.au/ebdressings

National EB Rapid Response Nurses

Recently, the nib foundation granted DebRA Australia’s application for funding and awarded DebRA Australia a massive $100,000 over 1 year to fund national, part time, rapid-response EB nurses. We are currently working with major hospitals to get these new resources in place. They will be available to attend to patient requirements and conducted approved visits around the country to wherever they are needed.

These nurses will be most beneficial when there is a new EB baby born and a rapid response nurse will be available to attend the hospital and to support and educate the parents and health professionals to care for the child. This is an important step towards providing equity of care for all EB patients across the country. The two new nurses will have dedicated mobile phone numbers which will be announced on the DebRA Australia website as soon as they are finalised. A big thank you goes to Telstra Country Wide for donating these phones for this project.

The nib foundation funding will also be used to provide some funding for the generation of future funding and for the administration of the nursing program.

More information regarding the names, location and contact phone numbers for these nurses will be announced on the website when the details have been finalised.

We would like to offer our thanks to the nib foundation for recognising the very real needs of our members.

August 2010: Update on our nib foundation funded National part-time rapid-response EB nurses

Debra are currently advertising for expressions of interest to fill the positions of 2 EB Rapid Response Nurses nationally. Currently we have not locked anything in, but stay tuned for more details as they come to hand.

We’d like to thank the nib foundation again for their generosity in funding these 2 important positions.