Rare Voices Australia

Happy New Year! The team at Rare Voices Australia (RVA) wish you and your loved ones a safe and happy start to 2025! 🎊 A big thank you for your support of RVA and the estimated two million Australians living with a rare disease in 2024. ❤️

Merry Christmas to those celebrating from the team at Rare Voices Australia! 🎄

🔬 Help shape rare disease research in Australia! (Survey closes next Monday, 23 December) Rare Voices Australia and The Kids Research Institute Australia (formerly Telethon Kids Institute) are conducting a Rare Disease Research Priority Setting Partnership Project. This project aims to identify and prioritise the 10 most important unanswered #research questions for the future of rare disease research in Australia. 👉 𝐂𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐢𝐬 𝐬𝐡𝐨𝐫𝐭 𝐬𝐮𝐫𝐯𝐞𝐲: https://lnkd.in/g-6mwjgk (🔗link in bio) Your input will inform a public report to guide rare disease research #advocacy.

Update: Review of the National Health and Medical Research Council Statement on Consumer and Community Involvement in Health and Medical Research The National Health and Medical Research Council (NHMRC) is currently reviewing the Statement on Consumer and Community Involvement in Health and Medical Research 2016 (the Consumer Statement). The aim of the Consumer Statement is to guide research institutions, researchers, consumers and community members about the active involvement of #consumers and community members in all aspects of health and medical research. 📥The online survey responses, including Rare Voices Australia’s (RVA) submission, are now available via the NHMRC’s Consultation Hub: https://bit.ly/4gDkBEX In addition to lodging a submission, RVA also contributed to one of the online workshops led by Health Translation Queensland. 📜Reports on the feedback received through the Australian Health Research Alliance (AHRA) workshops and online survey have also been published, and are available via the below web pages:  Engagement on Consumer Statement – AHRA: https://bit.ly/4ghRyXY  Online engagement report – NHMRC: https://bit.ly/4gxGyWF The NHMRC and the Consumers Health Forum of Australia (CHF) are working together on a draft revised Consumer Statement, which will be released for public consultation in 2025. Stakeholders will have an opportunity to provide feedback on the draft Consumer Statement before it is finalised.  #RareDiseaseResearch #HealthResearch #Advocacy

Express your interest in joining 𝐑𝐚𝐫𝐞 𝐕𝐨𝐢𝐜𝐞𝐬 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚'𝐬 𝐀𝐦𝐛𝐚𝐬𝐬𝐚𝐝𝐨𝐫 𝐏𝐫𝐨𝐠𝐫𝐚𝐦! 🤩 Rare Voices Australia (RVA) is currently seeking expressions of interest for the 2025-2027 RVA Ambassador Program. We’re keen to hear from a broad range of Australians living with a rare disease, including carers; family members; those living with an undiagnosed rare condition; bereaved parents; people living with a disability; and so on. The RVA Ambassador Program provides people living with a rare disease and those with professional experience of working with rare diseases with the opportunity to share their experiences with the broader rare disease sector.🌟 Learn more on RVA's website: https://bit.ly/3ZDbYER #RareDisease #RVAAmbassador #ShareYourColours

Survey: Rare Disease and Mental Health 🧠 People living with a rare disease often face unique challenges that impact their overall mental health and wellbeing. If you live with a #rare disease, University of Sydney researchers would love to hear from you about your experiences accessing mental health support and services and how these can be improved. The study invites adults 18 years and above living with a rare disease, to fill out an anonymous online survey about your experience with your rare disease, the impact this has on your #mentalhealth, and your experiences accessing and using mental health supports and services. The survey takes up to 30 minutes. For more information, see the survey on this webpage: https://lnkd.in/g9YKJ__H

In November, RVA focused our disability advocacy efforts on the future pricing framework of the National Disability Insurance Scheme (NDIS). This work included extensive consultation with and lodging a Submission to the Independent Health and Aged Care Pricing Authority (IHACPA), which has been tasked with advising the Australian Government on options for the future operation of NDIS pricing. This pricing framework will play a pivotal role in ensuring the sustainability, equity, and effectiveness of the NDIS. 👇Read the full November rare disease disability advocacy update in the article below.

𝗔𝘂𝘀𝘁𝗿𝗮𝗹𝗶𝗮𝗻 𝗚𝗼𝘃𝗲𝗿𝗻𝗺𝗲𝗻𝘁 𝗔𝗻𝗻𝗼𝘂𝗻𝗰𝗲𝘀 $𝟰𝟬 𝗠𝗶𝗹𝗹𝗶𝗼𝗻 𝗕𝗼𝗼𝘀𝘁 𝗳𝗼𝗿 𝗣𝗲𝗲𝗿 𝗦𝘂𝗽𝗽𝗼𝗿𝘁 𝗮𝗻𝗱 𝗖𝗮𝗽𝗮𝗰𝗶𝘁𝘆 𝗕𝘂𝗶𝗹𝗱𝗶𝗻𝗴 The Hon Bill Shorten MP, Minister for the National Disability Insurance Scheme, has issued a media release to announce $39.8 million in funding over two years in grants to 69 disability organisations across Australia. Read the media release: https://bit.ly/4gsVAwa As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is pleased to be one of the grant recipients. We will share more information with the rare disease sector as soon as we can. RVA congratulates all other grant recipients. A list of grant recipients can be found on the Peer Support and Capacity Building web page (click on ‘Recipients’ at the bottom of the page): https://bit.ly/4feQW3N 𝗗𝗶𝗿𝗲𝗰𝘁 𝗾𝘂𝗼𝘁𝗲𝘀 𝗳𝗿𝗼𝗺 𝘁𝗵𝗲 𝗺𝗲𝗱𝗶𝗮 𝗿𝗲𝗹𝗲𝗮𝘀𝗲 “The National Disability Insurance Agency (NDIA) today announced that 69 disability organisations have been successful in being awarded funding to provide community-based self-advocacy and peer support programs over two-years. “Minister for the NDIS, the Hon. Bill Shorten said these grants will provide important peer support for people with disability, allowing them to build their skills and connect with others who have shared similar experiences.” #RareDisease #Disability #Awareness #Education #Care #Support #Research #Data

The Science Within Us is a national school resource for students and their educators to explore concepts around genetic identity, in line with the Australian Curriculum. 🧬The aim is to improve students' genetic literacy and understanding of real-world application of genetics through powerful human stories. This free digital resource is tailored to Year 5-12 students, and is designed by Australian Genomics and Rare Voices Australia Partner, the Genetic Support Network of Victoria (GSNV). 💡Visit The Science Within Us website to learn more: https://lnkd.in/ghn2Rsa5 #Genetic #Education #eLearning #GeneticCondition

What do you think are the Top 10 Unanswered Research Questions for the Future of Rare Disease #Research in Australia? 👩🔬⚗🧫 ✍️ Survey closes soon on 23 December. 𝐂𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐢𝐬 𝐬𝐡𝐨𝐫𝐭 𝐬𝐮𝐫𝐯𝐞𝐲: https://lnkd.in/g-6mwjgk Rare Voices Australia and The Kids Research Institute Australia (formerly Telethon Kids Institute) are conducting a Rare Disease Research Priority Setting Partnership Project. Your input will inform a public report to guide rare disease research advocacy. #RareDisease #Research #Advocacy