Big #EBAwarenessWeek update out of EB Research Partnership (Australia) 🦋 So grateful to the entire team at The Royal Children's Hospital Foundation Melbourne and The Royal Children's Hospital for their dedication to the EB community and their partnership. We look forward to continuing to work alongside them to help fast-track heading for the EB community in Australia.
Little Jacob has one of the most severe cases of Epidermolysis Bullosa (EB) in Australia, known as Recessive Dystrophic EB. "When Jacob was born, he was missing skin on his left leg, from above the knee to the toes. We knew something was wrong,” his father, Nathan, shared. As a 'butterfly child,' Jacob’s skin is constantly damaged, making everyday activities—walking, eating, sleeping—painful. With daily support from nurses and carers, Jacob undergoes four hours of complex dressing changes every day to manage his condition and navigate the world safely. However, existing treatments take a significant physical and psychological toll on him and his family. But now there’s hope. The world’s leading EB researchers have made a breakthrough, and a new a therapeutic topical gene therapy gel is making a life-altering difference for RDEB patients. Sadly, this treatment is not yet available in Australia. That's why The Royal Children’s Hospital (RCH) Foundation, in partnership with The Royal Children's Hospital and EB Research Partnership (Australia), are working to help fast-track the topical gene therapy gel into Australia, making a life changing difference for Jacob and others like him. If you would like to find out more about how we helping children like Jacob get in touch with our team: https://lnkd.in/guJyTzdN #EBAwarenessWeek