Renae lives with Epidermolysis Bullosa (EB), a condition that causes fragile, blistering skin that tears easily and scars. The gene fault that caused Renae's EB is also responsible for her diagnosis of alopecia and dilated cardiomyopathy. Renae hopes to empower people to share their stories, so that we are reminded that we are not alone but part of one brave community!

Ava was born and diagnosed in 2017 with Maple Syrup Urine Disease (MSUD). Ava's mother, Tammie says it's been a very big learning journey but one in which her family has managed to find their feet and are now ready to have their voices heard regarding important issues such as inclusion, research, cures and more.

I was diagnosed with Juvenile Dermatomyositis (JDM) when I was three years old. JDM is a juvenile form of Myositis, a rare group of autoimmune diseases affecting the muscles.

After initially being misdiagnosed based on Gigi's genetic results, we finally received the correct diagnosis of Mosaic trisomy 20.

I was born in Wollongong, New South Wales in 1971. I was induced as I was two weeks overdue and severely jaundiced at birth.

I am a 75-year-old woman born with Poland Syndrome. I was born in 1946 in Sydney. My mother was 38 and thought my birth defects were caused by a fall she had when she was expecting me.

I was diagnosed at the age of three after a trip to the local general practitioner where the dark spots on my lips were noticed.

It was July 2020 and our son, Jacob, was 21 months old when his epilepsy journey began.

In 2013, I was diagnosed with an autoimmune disease called scleroderma that, on average, affects 6,000 Australians.

In 2021, I turned 50-years-old and decided it was time something was done about Poland Syndrome.

Emma’s story began seven and a half years ago… Emma is one of eight children in Australia with a rare condition called Ohdo syndrome.

Severe chronic idiopathic neutropenia impacts my life in a lot of ways.

"If there was one thing that I would have loved to hear when I started on my immune thrombocytopenic purpura (ITP) journey, and then have repeated back to me at certain points, it would be, 'It will be okay. You will be okay.'" - Danielle

I have a clinical diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS). Historically, this has been reported to have an incidence of somewhere between 1 in 2,500 and 1 in 5,000 people.

It was early 2018 when I was diagnosed with anti-neutrophil cytoplasmic antibody (ANCA) associated vasculitis.

My name is Catherine and I was formally diagnosed with Primary Ciliary Dyskinesia (PCD) in 1980 at the age of 11.