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Rare Voices Australia

We are delighted to report than an Australian national alliance for rare diseases has been established following the call from over 200 attendees at the “Awakening Australia to Rare Diseases” Symposium, which was hosted by the Office of Population Health Genomics, Department of Health, Western Australia and held in Fremantle in April 2011. The alliance is called Rare Voices Australia and will provide a unified voice for all Australians living with rare diseases.

This alliance was developed from post-Symposium meetings of the delegate supported National Rare Diseases Coordinating Committee and the National Rare Diseases Working Group. The organisation has been formed by a team of people who belong to various rare disease patient support groups around Australia, with the initial Board comprised of: Megan Fookes (Chair), Lesley Murphy (Secretary), John Forman, Imogen Yang and Tracy Dudding.  It is an exciting time and will require ongoing engagement with stakeholders as the Board continues the initial steps involved in setting up the new organisation. This includes formalizing the constitution, setting up a website and designing logos and branding.