RVA is advocating and presenting the rare disease health consumer perspective in a range of areas currently being reviewed by the Federal Government primarily in the health sector.
RVA has completed submissions to the following reviews and issues papers in response to Australian Government consultation process:
- Life Saving Drugs Program Review
- Review of Independent Medical Research Institutes – Issues Paper
- TGA Orphan Drugs Program Discussion Paper
- Review of Medicines and Medical Devices Regulation
- Unapproved Products Forum
- Medical Research Future Fund Senate Inquiry
- Medicare Benefits Schedule Review
- Review of Medicines and Medical Devices
- Inquiry into Chronic Disease Prevention and Management in Primary Health Care
- PBAC Guidelines Review
It is pleasing to note that Rare Voices Australia is recognised and respected by the Australian Federal Government as a National peak body for rare disease. RVA gives a voice to the Australian rare disease community and providing input in major policy change allowing for rare diseases to unofficially be noted in many policy areas. Long term RVA is advocating that a rare disease policy is formally adopted and a National Strategy is endorsed and implemented. It is pleasing to note this is now achieved at a State level in Western Australia but wouldn’t it be great to have this adopted by all other States and Territories and ultimately at a National level.
