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Episode 20: The National Epidermolysis Bullosa Dressing Scheme In this episode Epidermolysis Bullosa (or EB) is a rare disease characterized by fragile and blistering skin which requires the frequent application of dressings to repair and protect wounds. It is estimated that there are around 1,000 people in Australia who have some form of EB and over 500,000 worldwide. In this episode of Inform, we are talking with Rebecca Saad about the National Epidermolysis Bullosa Dressing Scheme. NEBDS is a government funded scheme which supports people with EB by providing affordable access to specialized bandages and dressings. Rebecca will take us through the scheme and provide us with some insights on what it means to be a clinician nurse supporting people with a rare disease.NEBDS “People who have EB are missing one of the genes in one of the layers of the skin. There’s many genes involved. They’re holding all the different layers of the skin together and they're important just to bring elasticity and allowing any type of frictional movement on the outside of your skin.” Recognising the critical need to support people with this rare disease, the Government established the NEBS and Rebecca Saad talks about how it works “We can help to reduce the financial burden of accessing wound care. But we can also help to reduce the burden of trying to find EB appropriate wound care.”A financial support scheme, the NEBDS also helps families step away from educating everyone and allows them to focus on being parents, family, friends and partners. Resources What is National Epidermolysis Bullosa (EB) Dressing Scheme? National Epidermolysis Bullosa (EB) Dressing Scheme - Download Resources
Transcript You can find a transcript of this episode here: Inform Podcast Episode 20: The National Epidermolysis Bullosa Dressing SchemeTranscriptDownload
Share your story Do you have a story that you’d like to share? Get in touch at inform@iagroup.org.au Inform is a production of Independence Australia. If you’re keen to hear more, you can go back and listen to our past episodes here. Stay tuned for the next episode of Inform. In the meantime, make sure you subscribe to Inform on your preferred podcast listening platform to be the first to hear about new episodes. Host and producer: Samsara DunstonManaging editor: Alison Crowe Our thanks to Rebecca Saad This episode of Inform was recorded and produced on the lands of the Wurundjeri people of the Kulin nation. We pay our respects to elders past and present.
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In this episode of Inform, we discuss the services provided by DANA – The Disability Advocacy Network of Australia and the Blue Knot Foundation in support of the Disability Royal Commission.
In this episode of the Inform podcast, we explore the Employment Assistance Fund and how it can help you get work and keep work.
In this episode of the Inform podcast, we talk to Kylie Maslen, the author of Show Me Where It Hurts: Living With Invisible Illness.
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