
Rare Voices Australia (RVA) is hosting an education webinar series for RVA Partner organisations that focus on research as one of their key strategic areas.
Such research could include discovery research, natural history research, or research to support Health Technology Assessments (HTA) for the Pharmaceutical Benefits Advisory Committee (PBAC). The webinar series will include three sessions that run for two hours each.
Note: these sessions are open to RVA Partner organisations only. If you are not an RVA Partner and would like to attend, click here for more information about becoming an RVA Partner.
RVA Education Webinar Series Details:
Session 1: Research Foundations
Date: Thursday, 29 July
Time: 12pm – 2pm (AEST)
RSVP: COB 22 July to: [email protected]
Webinar Outline
Working Effectively with Rare Disease Researchers with Hon Associate Professor Carol Wicking
Carol is an experienced rare disease researcher and is the former Chair of RVA’s Scientific and Medical Advisory Committee (SMAC).
Ethical Considerations in Rare Disease Research with Falak Helwani
Falak is RVA’s Research and Evaluation Officer.
Session 2: Building a Person-Centred Rare Disease Research Strategy
Date for Session 2: Thursday, 5 August
Time: 12pm – 2pm (AEST)
RSVP: COB 29 July to: [email protected]
Webinar Outline
Developing a Rare Disease Research Strategy with Lisa Melton
Lisa is the Research Manager at RVA Partner, Sanfilippo Children’s Foundation.
Involving Everyone in Research Codesign with Jack Nunn
Jack is a researcher and member of the Medical Services Advisory Committee’s (MSAC) evaluation subcommittee. He is also the Director and Founder of Science for All.
Session 3: Research for Health Technology Assessment
Date for Session 3: Friday, 13 August
Time: 12pm – 2pm (AEST)
RSVP: COB Friday, 6 August to: [email protected]
Webinar Outline
What Type of Consumer Led Research Can Add Value in HTA with Jo Watson
Jo is Deputy Chair of the PBAC.
Case Study: Collecting Consumer Data to Help Inform HTA of Treatments for Spinal Muscular Atrophy (SMA) with Julie Cini
Julie is the CEO of RVA Partner, SMA Australia.