The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF) have released the new Statement on Consumer and Community Involvement in Health and Medical Research (the Statement).

Stakeholder Reference Group (SRG) members met for the second time this year in April. The SRG continues to provide lived-experience guidance for the Rare Disease Disability Project.

“A short note to congratulate you and your team on hosting a wonderful conference in Brisbane. My first Rare Voices Australia conference, but not my last. I learned so much about rare diseases, the research and collaboration that’s going on and the patient and persistent advocacy” Industry