Rare Voices Australia Partners With Sydney Local Health District to Better Support Australians Living With a Rare Disease

RVA News

Rare Voices Australia (RVA) is pleased to partner with the Sydney Local Health District (SLHD) to better support the estimated two million Australians living with a rare disease. With a health-service driven action strategy and Leadership Committee, the partnership aims to provide a new focus and hope for Australians living with rare conditions.

As part of the broader SLHD, the Royal Prince Alfred (RPA) Hospital has been pioneering research, innovation and clinical trials. This research includes the gene and cell therapies pursued in the Department of Cell and Molecular Therapies since 1999, which provide a potential platform technology that could be extended to diverse diseases. Progress is already being made based on pivotal clinical trials undertaken at RPA Hospital and elsewhere.


The objectives for this exciting partnership are to strengthen the awareness, clinical management and research on rare diseases. RVA supports SLHD’s vision to revolutionise the health outlines and quality of life for people living a rare disease who are otherwise overlooked due to the rarity of their condition. To realise this vision, a dedicated SLHD Rare Diseases Steering Committee (the Committee) was established in 2022 as the first of its kind in any public health organisation in New South Wales and nationally. 

The Sydney Local Health District Rare Diseases Steering Committee

The Committee is chaired by Dr Teresa Anderson AM, Chief Executive, SLHD and Professor John Rasko AO, Head of Department, Cell and Molecular Therapies, RPA Hospital. The Committee has representation from a wide variety of medical specialties across SLHD. Nicole Millis, Chief Executive Officer (CEO) of RVA, is also on the Committee. The Committee is responsible for actioning the newly developed SLHD Rare Diseases Action Plan, driving excellence in the management and research associated with rare diseases in SLHD facilities and services, and meeting the goals outlined within the SLHD Rare Diseases Strategic Plan. Underpinning this strategy, is the Australian Government’s National Strategic Action Plan for Rare Diseases, which was launched in 2020.

Quotes: Sydney Local Health District Rare Diseases Steering Committee Members

Dr Teresa Anderson AM, Chief Executive, SLHD stated, “This exciting partnership between the District and Rare Voices Australia and the delivery of a health-service driven Rare Diseases Action Plan will truly transform the approach to rare diseases and provide hope for individuals who are often given no other options”.

Professor John Rasko AO, who has also served on RVA’s Scientific and Medical Advisory Committee since 2020, stated, “Support from our District has been overwhelming, with every clinical specialty offering representatives to the Steering Committee.”

 “We hope to encourage broad clinical awareness – rare diseases may be individually infrequent, and as such somewhat neglected, but they are collectively common,” Professor Rasko added.

RVA’s CEO Nicole Millis said, “It’s fantastic to see the Sydney Local Health District embracing the National Strategic Action Plan for Rare Diseases and leading the way in terms of health districts. Rare Voices Australia encourages all health systems and organisations to use the Action Plan to guide their work.”