Thank you to everyone who joined us in-person and virtually at Rare Voices Australia’s (RVA) 2022 National Rare Disease Summit (the Summit) on 11 and 12 November.
This was RVA’s first face-to-face Summit since 2018 due to COVID-19. The theme was, From Vision to Action: Celebrating 10 Years of Rare Disease Advocacy and Shaping the Next Decade. It was a pleasure to bring together key rare disease stakeholders to create a rare disease roadmap for the next 10 years, focusing on the National Strategic Action Plan for Rare Diseases.
RVA’s Chair, Joanna Betteridge, delivered a summary of the Summit to conclude the two-day event. We have transcribed Joanna’s summary here.
RVA also thanks those who joined us at our Gala Event on Friday evening to celebrate RVA’s 10th anniversary and 10 years of rare disease advocacy that influences policy and transforms lives. Thank you to our speakers and workshop facilitators who helped to make the Summit a success. RVA also acknowledges our RVA Ambassadors who so wonderfully opened the Summit by sharing their personal stories, which framed the event.
Special thanks to the Hon Mark Butler MP, Minister for Health and Aged Care, and Senator the Hon Anne Ruston, Shadow Minister for Health and Aged Care, for pre-recording video messages for the Summit. We also thank Dr Mike Freelander MP, Member for Macarthur; Chair of the Standing Committee on Health, Aged Care and Sport; and Co-Chair of the Parliamentary Friends of Australians Living with Rare Diseases for joining us in person.
In his video, Minister Butler launched the ‘Public Consultation Paper on the Newborn Bloodspot Screening Expansion’ (the Consultation Paper). RVA welcomes the Government’s consultation with stakeholders and will be responding to the Consultation Paper as the national peak body for Australians living with a rare disease. The Consultation Paper is available via the Government’s Consultation Hub until 12 December 2022. RVA has developed a resource to provide RVA Partner organisations, and the broader rare disease sector, with prompts that may assist in the development of a submission. Click here to read more and download the resource.
Feedback From Attendees
“I just left with such a buzz and so much joy. I can’t fault it. It was tiring and overwhelming but so fabulous.” – RVA Ambassador
“As my first time attending, I enjoyed all aspects of the Summit. The ambassadors’ personal stories were incredibly powerful and emphasised why RVA is so vital for the rare disease community.” – RVA Partner
“[The] Whole meeting was excellent as well as the networking. Ambassador stories give the purpose to RVA policies.” – Clinician
“This was honestly one of the best conferences I have been to with a good mix of presentations, Q&A and highly interactive workshops. The Summit was also the perfect size—not too big and not too small. Large enough to have a diverse set of attendees but small enough that you had the opportunity to cross paths with many others.” – Researcher
“It [the Action Plan] now does not sit as a document but has had life through ideas breathed into it.” – Industry
RVA is currently putting together a summary of the workshop reports backs, which will be shared with Summit attendees. All stakeholders who attended the Summit participated and contributed to the workshop sessions. We anticipate the summary will be distributed in early 2023.