Melissa Parke MP delivered a speech in Parliament on International Rare Disease Day (29th February 2016) on the need for priority focus for a Rare Diseases Policy. Read the speech...

Megan Fookes, co-founder of Rare Voices Australia was overwhelmed when she heard the news of receiving the Medal of the Order (OAM) on Australia Day. Megan has dedicated...

In its eighth year, the ECRD brings together over 80 speakers and more than 800 participants, covering six themes over two days, including the latest research...

RVA is advocating and presenting the rare disease health consumer perspective in a range of areas currently being reviewed by the Federal Government primarily in the health sector...

On 29 February 2016, people living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry will come together...

The theme for the Partners in Patient Health Asia Pacific Forum 2015 was ‘Working Together With One Voice’. This is is the second event, which aimed to convene leading patient...

A second and final newborn screening consultation workshop was held on 12 August 2015, to discuss the development of a national policy framework for...

Rare Voices Australia is thrilled to see the Australian Family Physician (published by The Royal Australian College of General Practitioners) focus on Rare Diseases, unexplained illness...

Rare Voices Australia launched the Parliamentary Friends of Rare Diseases in November 2014. RVA Patron, The Honorable Michael Kirby, welcomed Parliamentarians...

Rare diseases are characteristically difficult to diagnose and for the majority, there are no effective treatments or evidence-based management guidelines.

The Australian Government is inviting health consumers to contribute to the reform of the health system and delivering a Healthier Medicare. One of the priority...

RVA shares MDDA, PKU NSW and HCU’s encouragement by the recent public comment made by Federal Minister Sussan Ley stating they intend to take...