‘Hope in Clinical Trials: Advancing Research for Rare Diseases’: Parliamentary Friends of People with Rare and Undiagnosed Diseases – Western Australia

News

Rare Voices Australia (RVA) was pleased to contribute to a Parliamentary Event on 19 May hosted by the Parliamentary Friends of People with Rare and Undiagnosed Diseases (Parliamentary Friends Group) in Western Australia (WA), in collaboration with the Rare Care Clinical Centre of Expertise for Rare and Undiagnosed Diseases. The event, Hope in Clinical Trials: Advancing Research for Rare Diseases, marked Clinical Trials Day, which occurred on 20 May. RVA’s Chief Executive Officer, Nicole Millis; Director, Kane Blackman; Scientific and Medical Advisory Committee member, Clin/Prof Gareth Baynam; Education Project Officer, Jess Brooklyn; and RVA Ambassador Andrew Bannister were pleased to attend.

Clinical trials and the National Strategic Action Plan for Rare Diseases

The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) acknowledges that for many people living with a rare disease, participation in a clinical trial may be the only way to access treatment. Additionally, the Action Plan highlights the need for investment into clinical trials.

Images courtesy of Child and Adolescent Health Service

‘Hope in Clinical Trials: Advancing Research for Rare Diseases’

Nicole was pleased to emphasise the urgent need for investment and collaboration to develop clinical trial infrastructure. Clin/Prof Baynam spoke about rare diseases and clinical trials, underlining that there is currently limited access to clinical trials for children with a rare disease in WA. Attendees also heard from professional and lived experience experts who spoke on a panel session, which consisted of Kane whose son Finn lives with Angelman syndrome; Caroline Fitzpatrick, the mother of a child with a rare disease who could access a clinical trial interstate; Professor Merrilee Needham and Jayden Rogers.

RVA thanks Co-Convenors of the Parliamentary Friends Group, the Hon Matt Swinbourn MLC, the Hon Donna Faragher MLC and the Hon Stephen Pratt MLC, for their ongoing support of the rare disease community. We also thank the stakeholders who attended for their support of the estimated two million Australians living with a rare disease.

Why are Parliamentary Events important?

Parliamentary Events provide stakeholders, including people living with a rare disease, with the opportunity to meet and speak with politicians to further highlight rare diseases and mark important days such as Clinical Trials Day.