Awakening Australia to Rare Diseases

18 - 20 Apr 2011

Fremantle, Western Australia

This symposium builds on work initiated by the Australian Paediatric Surveillance Unit (APSU) and is an important step in the process of developing a rare disease strategy in Australia.

The symposium will draw together clinicians, researchers, government policy makers and regulators, industry and disease support and advocacy groups and builds on the work started by APSU and the National Rare Disease Taskforce.

The Office of Population Health Genomics has a mandate from the Director General of Health WA to coordinate a national symposium and begin the process of developing a rare disease strategy for Western Australia. Motivation for the symposium is to provide information and a framework for a national plan, to use the opportunity for engagement and to build long term relationships with industry, policy, advocacy and support groups, clinical and medical services across the spectrum of rare disease stakeholders. It is only through engagement and developing a strong national voice for rare diseases that a plan for Australia can be implemented.

IMPORTANT NEWS!

A very limited amount of funding has become available to provide financial assistance to people living with a rare disease* who are willing to register for the full 3 days of the symposium.

The Local Organising Committee will consider all eligible applications. The decision on the level of financial assistance offered will be based on offering the best support level possible to as many individuals living with rare diseases that the funds permit. The aim is to support the widest representation of rare disease stakeholders to attend and participate in this engagement event.

Submit Completed applications to the Local Organising Committee by FAX to (08) 9222 6820 or email to genomics@health.wa.gov.au with the subject header “LOC: Application for Support"

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