2021 Virtual Summit Agenda

Time
AEDT
Activity/TopicSpeaker/s
10:45amDelegate log-in commences
11amWelcomeJulian Morrow, Master of Ceremonies
11:05amAustralian Government's Commitment to Rare DiseasesHon Greg Hunt MP, Minister for Health and Aged Care
11:15amIntroduction and Importance of the Virtual National Rare Disease SummitJoanna Betteridge, Chair, Rare Voices Australia
11:20amAustralian Labor Party's Commitment to Rare DiseasesHon Mark Butler MP, Shadow Minister for Health and Ageing
11:30amSetting the SceneNicole Millis, Chief Executive Officer, Rare Voices Australia
11:35amNeroli's LegacyJock Cheetham
11:45amPanel Discussion: What Person-centered Means to People Living with a Rare DiseaseViswanathan Narayanaswamy (Vishy), Director, Rare Voices Australia
Monica Hunter
Andrew Bannister

Christine Lowe, President, Myositis Association Australia
Tim Fulton
12:40pmPanel Discussion: Emerging Therapies and Their Potential to Revolutionise Care for People Living with a Rare DiseaseDr Mike Freelander MP, Co-Chair, Parliamentary Friends of Australians Living with Rare Diseases; Deputy Chair, Standing Committee on Health, Aged Care and Sport
Trent Zimmerman MP, Co-Chair, Parliamentary Friends of Australians Living with Rare Diseases; Chair, Standing Committee on Health, Aged Care and Sport
Megan Donnell, Chief Executive Officer, Childhood Dementia Initiative
Renae Beardmore, Founder, Evohealth
Elizabeth de Somer, Chief Executive Officer, Medicines Australia
1:25pmBreak/Networking
1:55pmPanel Discussion: Ensuring Research into Rare Diseases is Collaborative and Person-centredJack Nunn, Researcher, Member of the Medical Services Advisory Committee's (MSAC) Evaluation Subcommittee, Director and Founder, Science for All
Clin/Prof Gareth Baynam, Western Australian Register of Developmental Anomalies, GSWA, WADoH, Centres of Expertise, Phenotyping, Digital Health (WA), RVA Scientific and Medical Advisory Committee
Prof Susannah Ahern, Head of the Registry Science and Research Program and Course Coordinator of the Master of Health Management/Master Health Administration and related courses at the School of Public Health and Preventive Medicine (SPHPM), Monash University
Prof John Christodoulou, Medical Geneticist, Genetic Pathologist, Clinical Scientist, Murdoch Children's Research Institute
Jarrod Belcher, Director, MTP Connect Researcher Exchange and Development within Industry (REDI) initiative
3:05pmPanel Discussion: Developing a National Rare Disease Workforce That Responds to Current and Future DemandsDr Emma Palmer, Clinical Geneticist, Sydney Children's Hospitals Network Randwick
Dr Angela Jackson, Lead Economist, Equity Economics
Nicky Conway, Workforce Working Group Lead, Industry Genomics Network Alliance (InGeNA)
Prof Adam Jaffé, University of New South Wales/Randwick, Respiratory Disorders, CF, Consumers, Clinicians & Clinical Trials (NHMRC), Chair, RVA Scientific and Medical Advisory Committee
Meagan Cross, Chairperson, Foundation for Angelman Syndrome Therapeutics Australia
3:45pmClosingKane Blackman, Deputy Chair, Rare Voices Australia
4pmVirtual Summit Ends

Please note: Agenda is subject to change

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