For many rare diseases, there are a number of barriers to effective research and no active research programs. Greater knowledge of rare diseases may facilitate more responsive and appropriate services for people living with a rare disease. Research into rare diseases must address existing gaps.
There is an understanding in the Australian rare disease community that, while research may not lead to better outcomes for people currently living with a rare disease, participating in research may drive change for future generations.
Rare Voices Australia and Research Partnerships
In line with the National Strategic Action Plan for Rare Diseases (the Action Plan), Rare Voices Australia (RVA) advocates for investment into all types of research related to rare diseases. We welcome genuine research partnerships on research of all types that broadly aligns with one or more of the research priorities detailed in the Action Plan.
• Relates to or is transferable to a range of rare diseases, and is collaborative and person-centred
• Responds to unmet need in rare disease and/or addresses existing gaps
• Involves coordinated and collaborative data collection that facilitates increased knowledge of rare diseases
• Can ultimately be translated into clinical care. Clinical care informs research, innovation and policy
Click here to read RVA’s Guidelines for Research Partnerships in full.
Scientific and Medical Advisory Committee
RVA’s Scientific and Medical Advisory Committee (SMAC) provides the organisation with medical and clinical perspectives, guidelines and information as needed.