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

Introduction

Ahead of the Federal Election, Rare Voices Australia (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 hosted a virtual NBS forum on Thursday, 16 June 2022. The forum brought 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 included 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.

Speakers:

  • Hon Ged Kearney MP, Assistant Minister for Health and Aged Care, Australian Labor Party
  • Dr Mike Freelander MP, Member for Macarthur, Australian Labor Party
  • Tiffany Boughtwood, Managing Director, Australian Genomics
  • Dr Kevin Carpenter, Chief Executive Officer (CEO), Human Genetics Society of Australasia (HGSA)
  • A/Prof Michelle Farrar, School of Women’s and Children’s Health, University of New South Wales; Paediatric Neurologist, Sydney Children’s Hospital Randwick
  • Louise Healy, Education and Advocacy Manager, RVA
  • A/Prof Sebastian Lunke, Clinical Scientist, Victorian Clinical Genetics Services, Murdoch Children’s Research Institute
  • Nicole Millis, CEO, RVA
  • Prof Ainsley Newson, Professor of Bioethics, University of Sydney
  • Dr Dianne Webster, Vice President, International Society for Neonatal Screening

This forum is ideal for:

  • People living with a rare disease who are interested in better understanding NBS and the current policy frameworks
  • Rare disease group leaders whose community has an interest in NBS
  • Clinicians, researchers, industry and government representatives looking for multi-stakeholder perspectives regarding NBS

RVA Education: Australia’s Rare Disease Landscape

Introduction

People living with a rare disease face unique challenges. The complexity and unmet need can be overwhelming for people living with a rare disease, policymakers, clinicians, researchers and industry. Due to limited data and high levels of uncertainty, people are often faced with difficult decisions, incomplete knowledge and unclear pathways.

After completing this course, you will better understand Australia’s rare disease landscape and policy environment.

This course is ideal for:

  • People living with a rare disease who are interested in understanding the current policy frameworks that impact Australians living with a rare disease
  • Anyone with an interest in the Australian rare disease landscape and policy
  • Those wanting to participate in consumer consultation or co-design across a range of rare disease awareness and education projects

Course content:

Module 1: Introduction to the rare disease sector

Module 2: Overview of Rare Voices Australia

Module 3: The National Strategic Action Plan for Rare Diseases

Module 4: Rare diseases and the Australian healthcare system

Course content is self-paced, so complete the modules in your own time.

You will need to complete Module 1 before moving on to Module 2. After making your way through the content, you’ll be asked to test your knowledge in a short quiz. Once you have successfully completed each quiz, you will receive a certificate that acknowledges your completion of this course.

RVA Education: How to Illuminate Landmarks to Celebrate Awareness Days

RVA Education: How to Illuminate Landmarks to Celebrate Awareness Days

Illuminating landmarks can be a powerful way to mark awareness days such as Rare Disease Day. Illumination activities showcase a united front and shine a light on rare diseases as a collective (Rare Disease Day) or for a specific rare disease. Additionally, illuminations help to raise awareness and may result in people and families living with a rare disease feeling seen and heard.

The more local and national buildings and monuments that are illuminated, the stronger the impact!

Once you have completed this course, you will:

  • Understand the basics of illuminating landmarks.
  • Be aware of the key factors to consider when reaching out to potential landmark contacts.
  • Know how to maximise the impact of illuminations organised.

The content is self-paced so complete the modules when it best suits you. You can test your understanding throughout and upon completion of the course, you will receive a certificate.

Rare Voices Australia (RVA) thanks RVA Partner, Fragile X Association of Australia, and rare disease advocate, Andrew Bannister, for working with RVA to develop this resource and for sharing their learnings and tips so generously with the rare disease community.

Please note: this course is available to RVA Partners only. Click here for more information about becoming an RVA Partner.

RVA Education: Amplifying Advocacy Using the National Strategic Action Plan for Rare Diseases

RVA Education: Amplifying Advocacy Using the National Strategic Action Plan for Rare Diseases

During these uncertain and challenging times due to COVID-19, effective advocacy is more important than ever. With so many competing issues and voices, it’s essential that the rare disease community make their voices heard.

With this in mind, Rare Voices Australia (RVA) has developed this online learning resource to assist you in amplifying your rare disease advocacy using the National Strategic Action Plan for Rare Diseases (the Action Plan).

The Action Plan was launched in February 2020 by the Minister for Health and Aged Care with bipartisan support. The Action Plan was developed ‘by the rare disease sector, for the rare disease sector’ and is a powerful tool that you can use to amplify your advocacy.

This learning resource provides information, case studies and examples to highlight the power of the Action Plan in advocacy.

Once you’ve completed the course, you will:

  • Understand the context and background to the development of the Action Plan.
  • Recognise the key features of the Action Plan that amplify advocacy.
  • Be able to use the Action Plan to amplify your advocacy.

The content is self-paced so complete the modules when it best suits you. You can test your understanding throughout and upon completion of the course, you will receive a certificate.

You will need to complete Module 1 before moving onto Module 2. After reading and watching all of the content, you’ll be asked to test your knowledge in a short quiz.

Please note: this course is available to RVA Partners only. Click here for more information about becoming an RVA Partner.