Rare Voices Australia (RVA) thanks everyone who attended our inaugural Queensland Parliamentary Event dedicated to people living with a rare disease.
This drop-in event provided RVA Partner group/organisation leaders with the chance to interact directly with parliamentarians who stopped by to meet RVA and others who represent people living with a rare disease.
Joe Kelly, Member for Greenslopes and Deputy Speaker, and Louise Healy (RVA)Dr Falak Helwani (RVA), Dr Carol Wicking (RVA), Brittany Lauga MP, Member for Keppel and Assistant Minister for Health and Regional Health Infrastructure and Louise Healy (RVA)Penny Deavin (RVA Partner, Muscular Dystrophy Queensland), Rob Molhoek, Member for Southport, Louise Healy (RVA) and Dr Falak Helwani (RVA) Robyn Burnett, Gordon Burnett (RVA Partner, Myositis Association Australia) and Charis Mullen, Member for Jordan and Assistant Minister for TreasuryJoe Kelly, Member for Greenslopes and Deputy Speaker, and Gordon Burnett (RVA Partner, Myositis Association Australia)Dr Carol Wicking (RVA), Kathlene Jones (RVA Partner, Prader-Willi Research Foundation of Australia), Dr Falak Helwani (RVA), Louise Healy (RVA) and Fiona Lawton (RVA Partner, Angelman Syndrome Association Australia)Fiona Lawton (RVA Partner, Angelman Syndrome Association Australia), Dr Falak Helwani (RVA) and Louise Healy (RVA)Dr Carol Wicking (RVA), Louise Healy (RVA), Gordon Burnett, Robyn Burnett (RVA Partner, Myositis Association Australia) and Teresa Pilbeam (RVA)Sue Hutley (Connective Tissues Disorders Network Australia), Dr Carol Wicking (RVA) and Robyn Burnett (RVA Partner, Myositis Association Australia)Melissa Camilleri (RVA Partner, Australian Pompe Association) and Anita Jackson (RVA Partner, Myasthenia Gravis Association of Queensland)Juliette Wilder, Tara Haneveld (Scleroderma Association of Queensland) and Dr Falak Helwani (RVA)Louise Healy (RVA) and Carolyn Dews (RVA Partner, Immune Deficiencies Foundation Australia)
As the national peak body for Australians living with a rare disease, the Parliamentary Event provided RVA with the opportunity to advocate for the following strategic aims:
Advocate for a stronger presence in Queensland’s Parliament
Work with parliamentarians to develop an implementation plan for progressing relevant aspects of the Australian Government’s National Strategic Action Plan for Rare Diseases
Identify the relevant division within Queensland’s Department of Health responsible for progressing a strategic approach to rare diseases
Please note
You are now leaving the Rare Voices Australia website to go to the Orphanet website.
Orphanet is a globally renowned portal for rare diseases and orphan drugs. The portal aims to provide high-quality information about rare diseases, and ensure equal access to knowledge for all stakeholders.
Please click here to continue to Orphanet: www.orpha.net
