Rare disease: uniting genetics and breakthrough medicine 2022

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While individual diseases may be rare, the total number of Australians living with a life-threatening rare disease is not.

Approximately 2 million Australians live with one of the 7,000 known rare diseases, which include childhood cancer and cystic fibrosis.

Rare diseases are often serious, complex and progressive. Access to research and funding is extremely limited, and treatment options can be prohibitively expensive and unequal. However, there is hope. By raising the profile of rare diseases, we can give affected individuals and their families the opportunity to have a better quality of life.

Join our expert panel with Associate Professor Michelle Farrar, child neurologist at UNSW Medicine & Health and Sydney Children's Hospital and Nicole Millis, CEO of Rare Voices Australia, the peak body for Australians living with rare diseases. In conversation with Tegan Taylor, ABC's health and science reporter, the discussion will shine a light on the current research, challenges and breakthroughs in this space.

About MedConnect

MedConnect is an exciting series proudly hosted by UNSW Medicine & Health, where we take time to discuss some of the biggest challenges facing healthcare today and into the future.

This event will be available on the UNSW YouTube channel. A link to watch the livestream will be sent on the event day to registered attendees.

Can't tune in to the event? Register to receive the on-demand recording.

Our speakers:

Associate Professor Michelle Farrar is a child neurologist and clinical academic at UNSW Sydney and Sydney Children's Hospital. A/Prof Farrar leads a comprehensive, integrated and multidisciplinary research program that guides evidence-based application of novel therapeutics in neuromuscular disorders.

Her innovative approach to spinal muscular atrophy, a previously untreatable disease that paralysed babies, has tailored health care to the individual with the translation of several gene and molecular therapies to transform health outcomes. Michelle continues to focus on improving care and accelerating biomedical research to provide clinicians with the tools, knowledge and therapies to select which treatments will work best for which patient.

Nicole Millis is the CEO of Rare Voices Australia. A qualified social worker, Nicole has both personal and professional experience in the rare disease sector and has over 12 years' experience in rare disease advocacy, particularly regarding access to treatments.

Under Nicole's guidance, Rare Voices Australia led the collaborative development of the National Strategic Action Plan for Rare Diseases, the first nationally coordinated effort to address rare diseases in Australia.

Tegan Taylor is a health and science reporter for the ABC and co-host of the ABC's multi-award-winning Coronacast.

She also co-hosts ABC Radio National's Health Report and hosts the live event series and radio/podcast Ockham's Razor. She's been known to pop up on Radio National Life Matters, Triple J and in the Best of Australian Science Writing. In 2020, Coronacast won a Walkley Award and the Eureka Prize for Science Journalism.

Tegan was previously a producer on the ABC's national digital newsdesk, a journalism lecturer at The University of Queensland and, long ago, a newspaper reporter.