Each year, Rare Voices Australia (RVA) coordinates an Education Program for RVA Partners and engages in wider based education activities as needed. RVA’s Education Program is tailored towards the needs of our RVA Partners and is delivered both online and via face-to-face events.

RVA’s 2023 Education Program

RVA will share details about our 2023 Education Program soon.

RVA’s Online Education Portal

To complement the workshops, webinars and customised mentoring support provided to RVA Partner organisations, RVA has launched an Online Education Portal. Available 24/7, the site will contain a number of open and partner only resources that will be added to over time.

These courses are both partner only access and are available to RVA Partners and the RVA Round Table of Companies. You can learn more about the benefits of becoming an RVA Partner here. Find out more about the RVA Round Table of Companies here. Open access resources will be added in 2022.

Accessing RVA’s Online Education Portal

If you are an RVA Partner or an RVA Round Table of Companies representative, after you register, you will gain access to both available courses after RVA approves your application (you’ll receive a confirmation email). We encourage all team members within your organisation to register and complete the trainings. Once you have successfully completed a course, you will receive a certificate. Register now.

Contact RVA if you have any queries about our Education Program or if you experience technical issues when trying to access the Online Education Portal.

Engaged, Ethical and Effective: A Guide for Rare Disease Organisation Leaders in Australia

To help address the need for additional support and resources to strengthen the rare disease sector, which is acknowledged in the Action Plan, RVA has launched (the Guide).

Who Is the Guide for and How Can It Be Used?

The Guide is for both established rare disease organisations and those who are interested in setting up an organisation. For existing rare disease organisations, the Guide can be used in several ways to complement the current status, resources and development phase of your organisation. For those who are investigating how to establish an organisation, this is an easy to follow resource that covers the key areas to consider. Read more about the Guide.

Chapter Breakdown

Chapter 1: 
Introduction to Rare Diseases, RVA, the Australian Landscape and the Action Plan
Chapter 2: Rare Disease Organisation Strategy
Chapter 3: The Vital Roles of Rare Disease Organisations
Chapter 4: Ethical Rare Disease Organisations
Chapter 5: Governance Foundations
Chapter 6: Funding Your Rare Disease Organisation
Chapter 7: Community Engagement
Appendices: Assessment Tools and Planning Template

Each section also contains information about the topic, links to relevant resources and a checklist or self-evaluation tool for identifying current strengths and areas for development.

Thank you to several of our RVA Partner organisations who contributed to the Guide throughout its evolution.