Time AEDT | Activity/Topic | Speaker/s |
10:45am | Delegate log-in commences | |
11am | Welcome | Julian Morrow, Master of Ceremonies |
11:05am | Australian Government's Commitment to Rare Diseases | Hon Greg Hunt MP, Minister for Health and Aged Care |
11:15am | Introduction and Importance of the Virtual National Rare Disease Summit | Joanna Betteridge, Chair, Rare Voices Australia |
11:20am | Australian Labor Party's Commitment to Rare Diseases | Hon Mark Butler MP, Shadow Minister for Health and Ageing |
11:30am | Setting the Scene | Nicole Millis, Chief Executive Officer, Rare Voices Australia |
11:35am | Neroli's Legacy | Jock Cheetham |
11:45am | Panel Discussion: What Person-centered Means to People Living with a Rare Disease | Viswanathan Narayanaswamy (Vishy), Director, Rare Voices Australia Monica Hunter Andrew Bannister Christine Lowe, President, Myositis Association Australia Tim Fulton |
12:40pm | Panel Discussion: Emerging Therapies and Their Potential to Revolutionise Care for People Living with a Rare Disease | Dr 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 |
1:25pm | Break/Networking | |
1:55pm | Panel Discussion: Ensuring Research into Rare Diseases is Collaborative and Person-centred | Jack 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 |
3:05pm | Panel Discussion: Developing a National Rare Disease Workforce That Responds to Current and Future Demands | Dr 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 |
3:45pm | Closing | Kane Blackman, Deputy Chair, Rare Voices Australia |
4pm | Virtual Summit Ends |
Please note: Agenda is subject to change