Rare Voices Australia Education and Mentoring Update: May – July 2021

RVA News

Rare Voices Australia’s (RVA) Education Program and mentoring support is tailored towards the needs of individual RVA Partner organisations and their unique strategic goals and aims. 

RVA’s Education Program

RVA’s Education Program includes regular education webinars, sessions for individual organisations, customised mentoring support and a suite of education resources, including our soon-to-be launched Online Education Portal. Click here for more information about our RVA Partner benefits and how to become an RVA Partner.

May – July 2021 update

Mentoring support

We have provided mentoring support to RVA Partners across a range of areas including Pharmaceutical Benefits Advisory Committee (PBAC) applications, research, political advocacy for legislative change, working with clinical trials investigators, research collaborations, lodging Government submissions, centres of excellence and newborn screening. RVA’s mentoring support often sees us leveraging our extensive network and drawing on the deep and broad expertise of our Scientific and Medical Advisory Committee (SMAC). 

Please contact Louise, RVA’s Education and Advocacy Manager, regarding all mentoring enquiries: [email protected]

Tailored education sessions

RVA has delivered tailored education sessions to a number of RVA Partner organisations and their communities. The following topics have been covered to date:

  • Introduction to Advocacy
  • Understanding Drug Development and Approval Processes in Australia
  • Understanding the National Strategic Action Plan for Rare Diseases
  • Tips for Making a Consumer Comment to the PBAC
  • Political Advocacy Strategies

RVA Partner organisations are welcome to request a customised session about a topic relevant to their community. Contact Louise to suggest a topic for a future session: [email protected]

RVA Education webinars

RVA has facilitated the following education webinars as part of our Education Strategy:

  • Fundraising Approaches for Rare Disease Organisations
  • Rare Disease Research in Australia (three-part webinar series)

Limited places are still available to attend the research webinars. Learn about webinar one on Thursday 29 July and webinar two on Thursday 5 August. To RSVP, reach out to Louise: [email protected]

RVA has also facilitated additional webinars to respond in a timely manner to pressing issues that impact the rare disease community.

Online Education Portal (coming soon)

Our team has been progressing work on our new Online Education Portal, which will be launching soon. All content will be available to RVA Partners.

A number of emerging and newly established rare disease organisations are currently road testing a draft version of our Guide to Starting a Rare Disease organisation in Australia. Once finalised, the Guide will be available online and as a hardcopy.

We have also been developing numerous online programs that will be released soon to RVA Partner organisations for feedback. They include:

  • Amplifying Advocacy Using the National Strategic Action Plan for Rare Diseases
  • How to Illuminate Landmarks to Celebrate Awareness Days

Our team is very excited to launch these self-paced programs that will be available on a 24/7 basis! We will also be developing further online learning resources.

It is always a great pleasure to support our RVA Partners in the important work they do. The passion, commitment and dedication of this community is truly inspiring.

Click here for more information about becoming an RVA Partner.

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