RVA Education: The Changing Face of Newborn Bloodspot Screening – A Rare Disease Sector Forum

Ahead of the Federal Election, RVA was excited to welcome the Australian Labor Party’s (ALP) commitment, if elected, to invest in consistent and equitable newborn bloodspot screening (NBS). The ALP forming a majority government presents the rare disease sector with a timely opportunity to revisit the challenges and gaps with NBS that RVA has been raising with Commonwealth and State governments over the last two years.

RVA is hosting a virtual newborn bloodspot screening (NBS) forum on Thursday 16 June from 12:30pm to 2:30pm AEST. The forum will bring together RVA Partners, NBS clinical and research experts, NBS policy experts and industry to discuss the importance of a consistent and equitable program, the role of national leadership, how the NBS program is changing and what these changes mean for the rare disease sector. Other topics may include how Australia’s NBS program compares to international programs, emerging research in the NBS space, the role of genomics and the link between NBS, care and policy.

Note: You must register to attend.

If you have already registered, you should have received a confirmation email from Zoom with the webinar ID, passcode and how to join the webinar on Thursday 16 June. Please also check your Junk and Other folders. If you do not have this information, please email: communications@rarevoices.org.au


12:30pm: Welcome and Personal Story
Louise Healy, Education and Advocacy Manager, RVA

Forum Objectives
Nicole Millis, Chief Executive Officer (CEO), RVA

Opening Address
Hon Ged Kearney MP, Assistant Minister for Health and Aged Care, Australian Labor Party

NBS Basics and Key Principles
Dr Kevin Carpenter, CEO, Human Genetics Society of Australasia (HGSA)

NBS: The International Perspective
Dr Dianne Webster, Vice President, International Society for Neonatal Screening

Important Ethical, Legal and Social Issues (ELSI) Considerations for NBS
Prof Ainsley Newson, Professor of Bioethics, University of Sydney

Case Study: What is Needed in NBS
A/Prof Michelle Farrar, School of Women’s and Children’s Health, University of New South Wales; Paediatric Neurologist, Sydney Children’s Hospital Randwick

NBS and Genomics; Other Pathways to Early Diagnosis
Tiffany Boughtwood, Managing Director, Australian Genomics

The Australian Government’s Commitment to NBS
Dr Mike Freelander MP, Member for Macarthur, Australian Labor Party

1:43pm—2:30pm: NBS Q&A Panel Discussion: Multi-Stakeholder Perspectives
Dr Mike Freelander MP, Dr Kevin Carpenter, A/Prof Michelle Farrar, Louise Healy, A/Prof Sebastian Lunke (Clinical Scientist, Victorian Clinical Genetics Services, Murdoch Children’s Research Institute)

Moderated by Nicole Millis
*Please note: Timings are listed in AEST and are an estimate only. The Agenda is subject to change.

Registration has now closed. The recording will be available on RVA’s Online Education Portal soon.