Interactive Health System Simulation Workshop: Integrated Care for People Living with a Rare Disease - 6 May 2024, Perth.

For more information, visit bit.ly/RArEST-project…

RVA Partner, Childhood Dementia Initiative, is hosting a webinar on research activity and inequity, and opportunities for change to accelerate treatment for childhood dementia.

📍24 April (Wed), 10am - 11am (AEST), on Zoom.

RSVP: events.humanitix.com/global-researc…

New Paediatric End-of-Life Care Communication course to help healthcare professionals to better engage with young people, families, and colleagues about end-of-life care in paediatrics.
Visit bit.ly/palliative-car….

Happy Easter to those celebrating from the team at Rare Voices Australia! 🐇🥚

'But one of the hardest things about living with a rare disease (aside from keeping track of the growing pharmacy sufferers house in our bedside drawers), is the lack of awareness.'

Read more about personal stories of women living with rare disease: bit.ly/bodyandsoulart…

RVA Partner, Reflections has launched new support resources for people affected by mesothelioma: The Hope Companion. It combines lived experience with medical insights, offering tailored support for patients and caregivers.📖
Visit Reflections' website: reflections.org.au/mesothelioma/t….

Dr (Elizabeth) Emma Palmer, senior clinical lecturer at the UNSW and leading co-author of the National Recommendations for Rare Disease Health Care was interviewed by WIN TV. Emma is also a member of RVA's SMAC.

Watch the interview at: fb.watch/qYuylRe7FN/

2024 Sawatzky Cup Trophy Presentation!

🎾Thank you to everyone who made this event a great success.

The final tally of $7,025 will assist RVA in the implementation of the Action Plan for Rare Diseases.

Photos: Scotty’s Media

2024 Sawatzky Cup Trophy Presentation!

🎾Thank you to everyone who made this event a great success.

The final tally of $7,025 will assist RVA in the implementation of the Action Plan for Rare Diseases.

Photos: Scotty’s Media

New workshop open to all stakeholders in the rare disease sector: Co-designing integrated care for people living with a rare disease

👉Thursday, 21 March, 11 am to 2pm, at Macquarie University.

Reserve your free ticket at lnkd.in/gMYqWBcQ.

RVA Partner, Childhood Dementia Initiative is hiring for an Education Lead. The role will be responsible for all aspects of CDI's education and awareness projects. Applications close on Friday, 22 March at 10am AEDT.

To apply, visit lnkd.in/gnEWVbqJ

Consultation is open on the consumer-led co-design of an Enhanced Consumer Engagement Process for health technology assessment (HTA).

You can provide feedback on the proposed recommendation here: health.gov.au/co-design-hta

Call for Candidate Medicines Nominations to expand treatment options and improve health outcomes for Australians. The program aims to encourage new medication ARTG registration and for listings on the PBS.💊

More information: tga.gov.au/resources/publ…

Uncommon Syndromes and Rare Diseases abc.net.au/listen/program…

Huge thanks to ABC Sydney Philip Clark for inviting Jan from Genetic Alliance AU and me to talk all things #rarediseases across Australia UNSW Medicine & Health Rare Voices Australia RARE Revolution Magazine Sydney Children's Hospitals Network Human Genetics Society of Australasia

29 February — the rarest day of the year was Rare Disease Day. The Mito Foundation team attended a Parliamentary Event in Canberra. Thank you to Rare Voices Australia for their ongoing work within this field and for hosting the event.

#RareDiseaseDay #MitochondrialDisease

RVA Partner, Angelina Cask Neurological Research Foundation (ACNRF) is featured in the first ever documentary on CASK disorders, named 'Life with CASK'.

This short film offers a raw glimpse into the realities of rare genetic conditions.

Watch here: youtu.be/nuju2hbeVVc?si….

insightplus.mja.com.au/2024/7/time-to… On the eve of #RareDiseaseDay2024 delighted to be heading to Australian parliament for the launch of our first-ever National Recommendations for Rare Disease Health Care … can’t wait to share with you all tomorrow Rare Voices Australia UNSW Medicine & Health Sydney Children's Hospitals Network

Thanks to the parliamentarians who spoke at RVA’s #RareDiseaseDay Parliamentary Event today & continue to show their ongoing support for Australians living with a rare disease!

We also thank our other speakers & everyone who attended RVA’s biggest-ever Parliamentary Event.

This #RareDiseaseDay , Rare Voices Australia is illuminating people living with a rare disease on the last day of February annually & beyond through our RVA Ambassadors & Rare Voices United campaign.🩷

Image credit (Katie Alexander photo): Alison Wynd, 2019, News Corporation

Australia's first #NationalRecommendations for Rare Disease Health Care have been launched this #RareDiseaseDay .

📑The Recommendations outline how Australian health professionals can provide high quality care to Australians living with rare disease: bit.ly/natrecommendat…