RVA Partner Education Webinar Series – Rare Disease Research in Australia

RVA News

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.

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