Thank you to those who attended Rare Voices Australia’s (RVA) 2021 Virtual National Rare Disease Summit (the Virtual Summit) on 12 November. The Virtual Summit brought together key stakeholders in the rare disease sector including people living with a rare disease, governments, key peak bodies, researchers, clinicians and industry. The theme was, ‘A person-centred approach to implementing the National Strategic Action Plan for Rare Diseases’. Person-centred is one of the Action Plan’s foundation principles and shaped the Virtual Summit. People living with a rare disease opened the event and shared their voice throughout. Panel sessions addressed the following key areas in rare disease:
- Lived experience
- Emerging therapies
- Research
- Rare disease workforce
RVA thanks the Hon Greg Hunt MP (Minister for Health and Aged Care), for formally opening the Virtual Summit, as well as the Hon Mark Butler MP (Shadow Minister for Health and Ageing) who delivered an address. We also thank Dr Mike Freelander MP (Co-Chair, Parliamentary Friends of Australians Living with Rare Diseases; Deputy Chair, Standing Committee on Health, Aged Care and Sport) and Trent Zimmerman MP (Co-Chair, Parliamentary Friends of Australians Living with Rare Diseases; Chair, Standing Committee on Health, Aged Care and Sport) who joined the ‘Emerging Therapies and Their Potential to Revolutionalise Care for People Living with a Rare Disease’ panel discussion and answered questions from attendees.
The Virtual Summit also featured a diverse range of speakers to reflect various stakeholder expertise. A big thank you to our speakers for sharing your invaluable insights with the rare disease sector. We also thank our Master of Ceremonies, Julian Morrow. Finally, thanks to all attendees for your questions and contributions throughout the day.
Over 140 people nation-wide registered to attend the Virtual Summit with each session stimulating much discussion that will further inform implementation of the National Strategic Action Plan for Rare Diseases.
Feedback from attendees:
“What a powerhouse RVA has become in just 10 years. So professional, so well connected and with such wonderful achievements all growing daily…” – RVA Partner
“It was one of the best online events I attended this year.” – Researcher
“The caliber of the speakers was very impressive and their contribution to the Summit was invaluable… Australia’s approach to rare diseases will go from strength to strength I am sure due to all the hard work by everyone involved in Friday’s Summit.” – Person with lived experience
“The quality of speakers and presenters was exceptional – but the focus and flow was excellent.” – Industry representative
