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Hi RVA Supporter,
Work on the Rare Awareness Rare Education (RARE) Portal has steadily progressed throughout 2024. The “provision of an accessible multi-purpose digital repository of information and resources for rare diseases, including available care and support services” is a key deliverable of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). Initial development of the RARE Portal was funded by the Australian Government with Rare Voices Australia (RVA) receiving $1 million over three years from 1 July 2021 to 30 June 2024 to lead the collaborative development of the RARE Portal and other education activities. We are pleased that funding for the RARE Portal will continue until at least September 2025.
Thank you to our RVA Partner group/organisation leaders who have shown so much enthusiasm about the RARE Portal and a genuine willingness to work with RVA to develop individual rare disease pages. It was fantastic to hear the excitement from all rare disease stakeholders about the RARE Portal at the 2024 National Rare Disease Summit (the Summit) in November. As reiterated at the Summit by attendees, the RARE Portal has become an integral platform for key stakeholders in the rare disease sector as it is customised for Australia and houses and links to important rare disease initiatives such as the RARE Helpline that work towards the best outcomes for Australians living with a rare disease. Our RARE Portal team is excited to progress this important work in 2025 and beyond and will continue reaching out to RVA Partner groups/organisations to assist with developing individual rare disease pages. We are working alphabetically through our RVA Partner group/organisation list.
Rare Awareness Rare Education (RARE) Portal Refresh in 2025
RVA is excited to share that we will be undertaking a RARE Portal refresh in 2025. Since taking the first steps in 2020 to start developing the RARE Portal, RVA has conducted over 50 interviews with RVA Partner groups/organisations and key stakeholders in the rare disease sector. RVA has adopted an iterative approach with RARE Portal development that prioritises collaboration and generating feedback from key stakeholders in the sector. This robust and extensive consultation process remains central to the RARE Portal’s ongoing development and the input and feedback generated to date will be central to the refresh. While paramount to the quality of content on the site, this process is also time consuming. Our team continues to progress several pages for all interviews conducted to date and are working to publish these pages as soon as possible.
2025-27 Rare Voices Australia Ambassador Program
Many of you will have heard from and spoken with our incredible inaugural RVA Ambassadors at several RVA events. Initially, RVA launched our Ambassador Program to coincide with our 10th anniversary in 2022 and the initiative has continued due to popular demand. 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.
To continue promoting diversity and showcasing the breadth of rare diseases and people’s unique stories, we will be refreshing our RVA Ambassador Program in 2025 through an expression of interest (EOI) process. 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. Learn more about what’s involved in being an RVA Ambassador and how to lodge an EOI via RVA’s website.
A big thank you to our inaugural ambassadors for their invaluable contributions: Katie Alexander; Andrew Bannister; Lachy Beckett; Ryan Brown; Ebony Callaghan; Nathan Charles; Tim Fulton; Tammie Rees; Beck Webber; and Renae Wood. At RVA, we never underestimate the difficulty of sharing personal experiences and you have all shared your stories so powerfully and been so generous with your time, effort and energy. We wish you all the best.
Wishing Everyone a Restful Holiday Break
With 2024 coming to an end, I’d like to acknowledge and thank the whole RVA team for their continued hard work and support – the RVA Board, our Scientific and Medical Advisory Committee, volunteers and especially my staff who exhibit such expertise, knowledge, persistence and good humour.
As this is our final RARE Portal eNewsletter for 2024, Merry Christmas to those who celebrate! I wish everyone a safe and wonderful start to 2025. It’s been another busy year for all rare disease stakeholders, and I hope you have a chance to rest and recharge over the holiday break. While there is always more work to do, it’s important to reflect on and celebrate what’s been achieved.
Nicole Millis
Chief Executive Officer
Rare Voices Australia |
