Watch the presentation with Louise Healy HERE
Louise Healy is the Education and Advocacy Manager at Rare Voices Australia (RVA), the national peak body for Australians living with a rare disease. Louise’s connection with rare conditions began when her first child was born with a rare metabolic disorder. Louise has been involved in rare disease support and advocacy for over 10 years and has led successful advocacy campaigns for access to medicines and support programs for people with rare disorders of protein metabolism. Louise is a previous RVA Board member, current member of the Queensland Genomics Community Advisory Board and a founding board member of the Global Association for PKU.
Louise presented at the 4th 2023 National Patient Focused Myasthenia Gravis Conference in Sydney where she provided invaluable insights into effective advocacy for rare diseases.