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Episode 20: The National Epidermolysis Bullosa Dressing SchemeIn this episodeEpidermolysis 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.ResourcesWhat is National Epidermolysis Bullosa (EB) Dressing Scheme?National Epidermolysis Bullosa (EB) Dressing Scheme - Download ResourcesTranscriptYou can find a transcript of this episode here:Inform Podcast Episode 20: The National Epidermolysis Bullosa Dressing SchemeTranscriptDownload

Share your storyDo you have a story that you’d like to share? Get in touch at [email protected] 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 CroweOur thanks to Rebecca SaadThis 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.Listen to more podcastsSubscribe to InformWant to be the first to know? Subscribe here to receive updates on our magazine, podcasts and more.Thank you! You're on the list to stay up to date with Inform.First Name