uniting AUSTRALIANS LIVING WITH RARE DISEASE

Rare Voices Australia (RVA) is Australia’s peak organisation for rare disease, advocating for Australians living with rare disease. We provide a strong, common voice to advocate for health policy and a health care system that works for people living with rare disease. Our person-centred focus sees RVA working with key stakeholders including people living with rare disease/advocates, key peak bodies, governments, researchers, clinicians and industry to promote rare disease, diagnosis, access to treatments, data collection, coordinated care, access to services and coordinated research.

In 2019, RVA held stakeholder consultation meetings in Sydney, Melbourne, Perth and Brisbane to provide key stakeholders with the opportunity to contribute to the National Strategic Action Plan for Rare Diseases. This is a critical step towards a National Rare Disease Framework and effective rare disease policy. RVA also distributed an online survey to RVA partners for patient organisation leaders who were unable to attend our consultations in person. The National Strategic Action Plan for Rare Diseases will be officially launched soon.

By working with our RVA partners and the Australian community in the advocacy space, we fight for an Australia that is Fair for Rare.

SAVE THE DATE:  RVA's biennial National Rare Disease Summit will be held on 20 and 21 November, 2020 in Sydney. The event will be invite only. RVA will share more information about the Summit in early 2020.