Rare Awareness Rare Education (RARE) Portal

Rare Voices Australia (RVA) is leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal for rare diseases. In line with the National Strategic Action Plan for Rare Diseases (the Action Plan), the portal will be an accessible multi-purpose website that includes information and resources for rare diseases that are customised for the Australian context.

The RARE Portal is one of the key deliverables of the Action Plan:

Action 2.1.2.1. Develop an accessible multi-purpose digital repository, incorporating elements targeted at the workforce that supports people living with a rare disease. With access to adequate information, health care and social support professionals will be equipped to support people living with rare disease and their families to navigate health, disability and other systems.

The RARE Portal will be a dynamic repository of rare disease information, state-and territory-based care and support services, and research and clinical trials information. It will highlight the gaps across all facets of rare disease care management and gaps in our basic understanding of specific rare diseases. The portal will guide the way forward for evidence-based policy and strong Australian-based research and innovation into all rare diseases.

RVA will commence a multi-stakeholder consultation process to develop the portal shortly. As part of this, we will be reaching out to key stakeholders, including RVA Partner organisations.

The Action Plan demonstrated what the rare disease sector can achieve when we encourage collaboration and work as one unified voice. We need to continue building on this momentum to achieve the best possible outcomes for Australians living with a rare disease.

RARE Portal logo

Reflecting the Action Plan, the RARE Portal will be ‘developed by the rare disease sector, for the rare disease sector.’ The use of a single bird in the logo symbolises the coming together of all stakeholders to develop the portal with a unified voice. The colour palette remains in line with RVA’s branding as the peak body for Australians living with a rare disease. While RVA is leading work on the RARE Portal, the website will be informed by extensive stakeholder consultation. Once the site is launched, the sector will need to work together to raise awareness of the RARE Portal.

RARE Portal updates

RVA will circulate updates about the RARE Portal as it develops.

Contact us with any questions you may have about portal.