RVA contributes to national processes and facilitates the adoption and implementation of national plans and strategies for rare diseases.
On 17 October 2019, Rare Voices Australia launched the report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases, at Parliament House. The report highlights significant unmet need and the need for the health and disability sectors to collaborate to provide person centred care.
In 2018, the Asia-Pacific Economic Cooperation (APEC) launched a Rare Disease Action Plan to provide APEC Economies with a framework for policy action to tackle the challenges of rare diseases. RVA partner organisations as well as RVA’s Scientific & Medical Advisory Committee provided input into the Action Plan during the consultation phase. The Action Plan outlines 10 key areas for action in relation to rare disease including raising public awareness, the better use of technology to enhance the purposeful use of data in clinical decision-making and healthcare system design to ensure that patients are diagnosed and cared for in a timely manner. The Action Plan calls for APEC’s 21-member economies to improve the economic and social inclusion of people living with rare disease, with clear targets, by 2025.
COVID-19 (2020): flexible school attendance requirements for rare disease community
RVA has reached out to all state education ministers and Chief Health Officers regarding the need for flexible school attendance requirements for the rare disease community. Here is a template of the letter that has been sent. We encourage you to use this letter in your ongoing individual advocacy.
COVID-19 (2020): Priority testing and turnaround times - 23/03/2020
RVA has reached out to all state Health Ministers and Chief Health Officers to request that they prioritise COVID-19 testing and turnaround times for people living with a rare disease who are displaying symptoms. Here is a template of the letter that has been sent. We encourage people to use this letter in your ongoing individual advocacy as the COVID-19 pandemic unfolds.
Critical care guidelines for Australians living with a rare disease - 08/04/2020
On 8 April 2020, RVA released this statement, which has been developed in conjunction with our Scientific and Medical Advisory Committee following the COVID-19 press release issued by EURORDIS on 31 March 2020.
On 26 February 2020, the Federal Minister for Health, the Hon Greg Hunt MP, formally launched the National Strategic Action Plan for Rare Diseases (the Action Plan). RVA led the collaborative development of the Action Plan with its vision being to achieve the best possible health and wellbeing outcomes for Australians living with a rare disease. The priorities underlying this policy framework, including awareness and education, care and support and research and data, are all highly relevant to Australia’s response to the COVID-19 pandemic. RVA urges policy makers and authorities to specifically consider people living with a rare disease during the COVID-19 crisis, and to take action to ensure their individual clinical needs are met.
National Strategic Action Plan for Rare Diseases
2017 Release of the Life Savings Drug Program Review Reports:
Post-market review of the Life Saving
June 2014 – June 2015
Report to the
Australian Government response to the
Post-market Review of the Life Saving Drugs
Rare disease registries: a call to action
National Rare Disease Framework : 6 Strategic Priorities
Funding Rare Disease Therapies in Australia – Ensuring equitable access to health care for all Australians - The McKell Report
International Joint Recommendations to Address Specific Needs of Undiagnosed Rare Disease Patients