Rare Voices Australia

Rare Voices Australia Partner, Maddie Riewoldt’s Vision, is thrilled to announce that registrations are open for their second Patient and Family Educational Session in 2024, focusing on Diamond-Blackfan Anaemia.   📅 Session 2 – Diamond-Blackfan Anaemia Date: Wednesday 31 July Time: 7.30 pm – 8.30 pm (AEST) Location: Zoom (link to be provided) Hear from medical experts who will provide an introduction to Diamond-Blackfan #Anaemia and an overview of the latest research and treatments for this condition. To reserve your free ticket, visit https://lnkd.in/gcYCa5Rs or contact research@mrv.org.au.

Participate in the Department of Health and Aged Care's "Australian Health and Medical Research Workforce Survey" (the Survey).⚕️ The aim of the Survey is to understand the demographic features, work environment, challenges, and motivations of health and medical researchers across Australia, including those in research support roles. 𝐒𝐮𝐫𝐯𝐞𝐲 𝐥𝐢𝐧𝐤: 𝐡𝐭𝐭𝐩𝐬://𝐛𝐢𝐭.𝐥𝐲/𝟑𝐒𝐢𝐖𝐰𝐉𝐎 This Survey and your answers will contribute supporting evidence to the development of the National Health and Medical Research Strategy and future policies.🧑⚕️ The Survey closes on 9 August, 2024. Read more on RVA's website: https://lnkd.in/gpG6qrSD 🤝 Share this with your network who have had either direct or supportive roles in research, including those in the not-for-profit space, to take part in this Survey.

𝐑𝐚𝐫𝐞 𝐁𝐚𝐫𝐨𝐦𝐞𝐭𝐞𝐫 𝐒𝐮𝐫𝐯𝐞𝐲: 𝐓𝐡𝐞 𝐈𝐦𝐩𝐚𝐜𝐭 𝐨𝐟 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞𝐬 𝐨𝐧 𝐃𝐚𝐢𝐥𝐲 𝐋𝐢𝐟𝐞 EURORDIS-Rare Diseases Europe European Rare Diseases Organisation has launched its latest Rare Barometer survey, which is open to all people living with a rare disease and their family. The survey is intended to assist with working towards and advocating for people with rare diseases to access their rights and participate in society on an equal basis with others.🫱🏼🫲🏻 📝 The survey will take approximately 20 minutes to complete and is available in 25 languages. The results will be shared with Rare Voices Australia as the national peak body for Australians living with a rare disease. The survey closes on 8 September. Survey link: https://lnkd.in/g_Di3Dvm #RareDisease

Today (22 July) is World Fragile X Day!🧡 Join Rare Voices Australia Partner, Fragile X Association of Australia, to shine a light and show support for the Fragile X community. Landmarks around the country are lighting up in orange tonight. ✨Visit Fragile X Association of Australia's website for the list of landmarks and more information. Fragile X syndrome is the leading cause of inherited intellectual disability and developmental delay. Fragile X Association of Australia serves as the peak body for the Fragile X community across Australia. #WorldFragileXDay #RareDisease

💭Living with a rare disease does not only impact a person’s physical health; it impacts every facet of their life, including their #mental health and #wellbeing. People living with a rare disease, including their family and carers, often experience ongoing stress and uncertainty, high burden of care, and feelings of despair, isolation and grief. 🌫 💡This Mental Health and Wellbeing Support for Australians Living with a Rare Disease page contains information on mental health services and resources available in Australia. It includes 𝐠𝐞𝐧𝐞𝐫𝐚𝐥 𝐦𝐞𝐧𝐭𝐚𝐥 𝐡𝐞𝐚𝐥𝐭𝐡 𝐬𝐞𝐫𝐯𝐢𝐜𝐞𝐬 𝐚𝐧𝐝 𝐫𝐞𝐬𝐨𝐮𝐫𝐜𝐞𝐬 for: • People living with a rare disease • Rare disease group/organisation leaders • Families and carers • Health professionals Learn more on the Rare Awareness Rare Education (RARE) Portal: https://lnkd.in/ghgNVzxM

$𝟯.𝟰 𝗺𝗶𝗹𝗹𝗶𝗼𝗻 𝘁𝗼 𝗮𝗰𝗰𝗲𝗹𝗲𝗿𝗮𝘁𝗲 𝗪𝗲𝘀𝘁𝗲𝗿𝗻 𝗔𝘂𝘀𝘁𝗿𝗮𝗹𝗶𝗮'𝘀 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗶𝗻𝘁𝗼 𝗿𝗮𝗿𝗲 𝗮𝗻𝗱 𝘂𝗻𝗱𝗶𝗮𝗴𝗻𝗼𝘀𝗲𝗱 𝗱𝗶𝘀𝗲𝗮𝘀𝗲𝘀, 𝗴𝗲𝗻𝗲 𝘁𝗵𝗲𝗿𝗮𝗽𝗶𝗲𝘀 𝗮𝗻𝗱 𝗹𝘂𝗻𝗴 𝗰𝗮𝗻𝗰𝗲𝗿 𝗺𝗮𝗻𝗮𝗴𝗲𝗺𝗲𝗻𝘁 Rare Voices Australia (RVA) welcomes the Western Australian Government’s $3.4 million funding to establish collaborative medical research centres as part of the Collaborative Centres Program, a new initiative of the Future Health Research and Innovation (FHRI) Fund. Read more about this announcement: https://bit.ly/3W8AqLl The $3.4 million funding will enable the Rare Care Centre at the Child and Adolescent Health Service (CAHS) to establish a global leading Collaborative Centre for Research and Innovation Excellence for Rare and Undiagnosed Diseases in Western Australia. The commitment reiterates the importance of embedding research into rare disease care and support that meets the needs of the estimated two million Australians living with a rare disease. The Rare Care Centre is also partnering with RVA as part of the Commonwealth-funded initiative, The Navigator Project. As the national peak body for Australians living with a rare disease, RVA supports the establishment of Rare Disease Centres of Expertise (CoE) as part of the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases. CoE and a sustainable workforce are critical to addressing gaps in rare disease care as well as significant unmet needs and gaps across the rare disease community. #Research #Data #RareDisease #Awareness #Education #Care #Support

Community and Patient Preference Research (CaPPRe) is partnering with Rare Voices Australia and a group of community stakeholders to conduct an online survey with patients and carers in Australia. Your participation is valuable in exploring the priorities and concerns of people impacted by rare diseases when it comes to #genomic testing options. 🙋Who can participate? We are looking for people living with a rare disease in Australia and/or their carers. Participants must be over the age of 18 to answer the survey. 🧬The goal of this #research is to provide insights into the values and preferences of the patient community to policy-makers within government who make decisions regarding public funding for genomic testing. For example, decisions regarding whether a genomic test is added to the #Medicare Benefits Schedule ('Medicare'). 📋Survey link: https://bit.ly/4aAOSRu We encourage rare disease group/organisation community leaders/members to fill out the survey and share this opportunity with their communities.  

📞The Carer Gateway Counselling Service is a free phone counselling service for unpaid #carers across Australia. Counselling is available to carers from 8am to 6pm nationally on weekdays. Counsellors speak languages other than English, use the #Translating and Interpreting Service, have received Aboriginal and Torres Strait Islander Mental Health First Aid training and have experience in working respectfully with Aboriginal and Torres Strait Islander carers. For more information, visit Carer Gateway’s website: https://lnkd.in/g6PuxAz #SupportForCarers

28 June was International Neonatal Screening Day. Rare Voices Australia's (RVA) Chief Executive Officer, Nicole Millis, was interviewed by WIN News on the importance of newborn bloodspot screening (NBS). NBS is an important program that supports the earliest possible diagnosis of some rare diseases and enables the best immediate treatment and care. 🚼 Australian babies have been screened using #NBS since the 1960s and while there is more work to do, several promising developments have been progressed in recent times, including the Australian Government’s investment of $25 million in the 2024-25 Federal Budget to support the continued delivery of NBS expansion and consistency of conditions. For the first time in 60 years, Australia has an agreed national list of NBS conditions and there is specific #funding to achieve consistency across the country, cementing Australia as a world leader in NBS. RVA will continue working with all Australian governments to assist with NBS expansion. https://lnkd.in/gmfRn5J3

July 7 to 14 is National NAIDOC Week, which celebrates the history, culture and achievements of Aboriginal and Torres Strait Islander people. NAIDOC Week is an opportunity for all Australians to learn more about Aboriginal and Torres Strait Islander communities. 👉 Go to the official NAIDOC Week website for more information: https://www.naidoc.org.au/ The 2024 NAIDOC theme is ‘Keep the Fire Burning! Blak, Loud & Proud’, a call to honour the enduring spirit of Aboriginal and Torres Strait Islander cultures. As acknowledged in the Australian Government's National Strategic Action Plan for Rare Diseases, Aboriginal and Torres Strait Islander people are a priority population of the rare disease sector. While Aboriginal and Torres Strait Islander people are not necessarily at greater risk of rare diseases, several factors increase the potential impact of rare diseases on Aboriginal and Torres Strait Islander people. The lack of research into rare diseases means our knowledge on which rare diseases are most prevalent among Aboriginal and Torres Strait Islander people is incomplete. Given the genetic basis of most rare diseases, research exploring this is vital. #NAIDOC2024 #NAIDOCWeek