RVA’s Rare Disease Day Media Summary

A big thank you to everyone who played a role in helping to generate awareness for 2021 Rare Disease Day. Below, we have included a summary of media generated that RVA was involved in securing and/or were featured in.

Sunday Extra – ABC Radio National | Radio

Aired on Sunday (28 February) morning, this segment featured clinical geneticist, Dr Lisa Ewans who is a member of RVA’s Scientific & Medical Advisory Committee, as well as Sean Murray, the CEO and a founding director of RVA Partner, Mito Foundation, and Christine Lowe, President of RVA Partner, Myositis Association of Australia Inc.

Listen to the Sunday Extra segment on the ABC Listen app or your favourite podcast app. We’ve listed the Apple Podcasts and Google Podcasts links below.

Apple Podcasts (go to the 2hrs 33 min mark)

(go to the 2hrs 33 min mark)

SBS news | TV and online

Aired on Sunday (28 February), this story featured Monty, an eight-year-old boy living with pontocerebellar hypoplasia. The story also included commentary from RVA’s CEO, Nicole Millis.

You can watch the TV segment that aired on SBS On Demand (available until 7 March). Go to the 29th minute mark on to watch the story.

An online article accompanied the TV story.

2GB (NSW) | Radio

Nicole Millis was interviewed about whole-genome sequencing in a package that aired on Sunday (28 February). Click here to listen to the clip.

This interview was syndicated across 4BC, 2CC, 5AA and 4BC.

Newscorp | Online

This story ran online on 26 February and was widely syndicated across four states. The reporter explores the story of families from three RVA Partner organisations: SCN2A Australia, Rare Find Foundation and ausEE Inc. The article also features Angelina and her family’s story – Angelina was part of the global Rare Disease Day campaign. Nicole Millis provides commentary. Click here to read the article.

The Advocate | Online

Three articles ran in The Advocate ahead of Rare Disease Day:

Damian’s story – Damian is a member of RVA Partner, Myositis Association of Australia Inc.

Angelina’s story – Angelina was part of the global Rare Disease Day campaign.

Tim’s story – Between 12 August 2020 and 28 February 2021 (Rare Disease Day), Tim ran 100km in 200 days to raise awareness for rare diseases. All funds raised were donated to RVA.

Source Kids Magazine | Online

A story will run in Source Kids’ Autumn issue, featuring commentary from Nicole Millis. We will share the article as soon as it’s available.

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