Renae was born with EB Simplex (Dowling Meara) in 1994. Doctors were immediately alarmed by missing skin on Renae’s limbs, and it wasn’t long before she was diagnosed.
Growing up with EB came with certain challenges, both physically and emotionally, but it has made Renae into the person she is today. Living with EB has taught her to be strong, resilient and to persevere through the toughest days.
There have been times that living with a rare disease has felt isolating, but DEBRA have fostered a wonderful community for people and families living with EB. A place that can support you with resources, but also a place for building connections.
Renae is also an Ambassador for Rare Voices Australia, which is the National Peak Body for Australians living with Rare Disease. Renae uses this platform to help promote awareness for Rare Diseases and to encourage others to share their stories. EB may be rare, but Renae believes that by sharing our experiences, we connect with others and the broader community to make meaningful change.