Hi RVA Supporter,

Happy New Year! I hope your 2026 is off to a great start. The team at Rare Voices Australia (RVA) has hit the ground running in the lead-up to Rare Disease Day on Saturday, 28 February.

To mark Rare Disease Day, RVA is facilitating our annual Federal Parliamentary Event on Monday, 2 March 2026 from 12pm to 2pm. The event will be hosted by the Parliamentary Friends of Australians Living with a Rare Disease Co-Chaired by Dr Mike Freelander MP, Member for Macarthur, Senator Wendy Askew, Senator for Tasmania, and Dr Monique Ryan MP, Member for Kooyong. Attendance is by invitation only to ensure appropriate representation across the sector. One representative from each RVA Partner group/organisation will be invited. Invitations and more information will be distributed to those invited in February.

Rare Disease Day is marked on the last day of February annually. It is a globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis for people living with a rare disease. RVA is on the Steering Committee for Rare Disease Day, which focuses on longer term campaign strategy planning. See the official Rare Disease Day website to download the 2026 promotion materials and for the latest updates. You can also submit any events you may be organising.

Launch of the Rare Disease Disability Toolkit

The Rare Disease Day Federal Parliamentary Event provides RVA with the perfect opportunity to launch the first round of resources developed for the nationally codesigned Rare Disease Disability Toolkit. RVA is in the process of incorporating the feedback gathered at the 2025 Rare Disease Disability Showcase. Please continue checking the dedicated Rare Disease Disability Project webpage on RVA’s website for the latest updates.

Rare Voices Australia 2025 Annual Report

RVA has published our 2025 Annual Report, which includes the outcomes from measuring implementation of the Australian Government's National Strategic Action Plan for Rare Diseases (the Action Plan). Measuring the systemic and human impact of the Action Plan requires more than counting and categorising activities. To address this challenge, in 2024, RVA staff engaged in training for the Most Significant Change (MSC) methodology. The framework was then adopted by the organisation as a measurement tool.

As part of measuring implementation progress for the Action Plan, RVA collected stories from a diverse range of stakeholders. Thank you to those who participated in this important work by sharing their stories. Read the 2025 Annual Report, which also highlights the breadth of RVA’s work as the national peak body for Australians living with a rare disease, at RVA's website. The 2025 Annual Report is another opportunity for RVA to acknowledge the key stakeholders that contribute to RVA’s work and the rare disease sector.

Save the Dates: 2026 National Rare Disease Summit and 2026 Rare Disease Disability Network Showcase

RVA will be hosting the next National Rare Disease Summit on 20 and 21 November 2026 in Melbourne. The 2026 Rare Disease Disability Network Showcase will take place on 19 November at the same venue. Attendance at both events is by invitation only to ensure appropriate representation across the sector. We will share more information with those invited as soon as possible. For now, please save these dates in your calendar if you anticipate receiving an invitation to either or both events.

Rare Voices Australia Board Update

I also note the recent resignation of Andrew Carter from the RVA Board. Andrew is a former Deputy Chair of the organisation and has made an invaluable contribution. We wish Andrew all the best for the future. 

Nicole Millis
Chief Executive Officer
Rare Voices Australia

Personal Story of the Month

RVA's Chief Executive Officer (CEO) shares how her 'systemic advocacy' first began as a rare disease mum back in 2008. Nicole writes about her experience trying to gain access to treatment for her son who was seven at the time. She goes on to share her learnings about advocacy and more about her involvement in health technology assessment now as RVA's CEO. 

Save the Date 

Rare Disease Day Parliamentary Event - 2 March 2026

RVA will facilitate our annual Rare Disease Day Federal Parliamentary Event on Monday, 2 March 2026 from 12pm to 2pm. The event will be hosted by the Parliamentary Friends of Australians Living with a Rare Disease Co-Chaired by Dr Mike Freelander MP, Member for Macarthur, Senator Wendy Askew, Senator for Tasmania, and Dr Monique Ryan MP, Member for Kooyong. Attendance is by invitation only to ensure appropriate representation across the sector. One representative from each RVA Partner group/organisation will be invited. Invitations and more information will be distributed to those invited in February.

2026 Rare Disease Day: Saturday 28 February

Official 2026 Rare Disease Day Video

Official 2026 Rare Disease Day Posters

Rare Disease Day is marked on the last day of February annually. In 2026, Rare Disease Day falls on Saturday 28 February. Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis for people living with a rare disease. RVA is on the Steering Committee for Rare Disease Day, which focuses on longer term campaign strategy planning. The 2026 promotion materials and the latest updates are available via the official Rare Disease Day website. 

Globally, 300 million people worldwide live with a rare disease. Locally, Rare Disease Day is an opportunity to raise awareness and inform policymakers about the issues faced by the Australian rare disease community, with the aim to achieve the best outcomes for Australians living with a rare disease. 

RVA will be hosting the next National Rare Disease Summit on 20 and 21 November 2026 in Melbourne. The 2026 Rare Disease Disability Network Showcase will take place on 19 November at the same venue. Attendance at both events is by invitation only to ensure appropriate representation across the sector. We will share more information with those invited as soon as possible. For now, please save these dates in your calendar if you anticipate receiving an invitation to either or both events.

RVA's 2025 Annual Report includes the outcomes from measuring implementation of the Australian Government's National Strategic Action Plan for Rare Diseases (the Action Plan). Measuring the systemic and human impact of the Action Plan requires more than counting and categorising activities. To address this challenge, in 2024, RVA staff engaged in training for the Most Significant Change (MSC) methodology. The framework was then adopted by the organisation as a measurement tool. As part of measuring implementation progress for the Action Plan, RVA collected stories from a diverse range of stakeholders. Read the 2025 Annual Report at RVA’s website. 

RVA Scientific and Medical Advisory Committee member, Clin/Prof Gareth Baynam, has been profiled in the Winter 2025/26 edition of RARE Revolution Magazine. Read the feature interview at RARE Revolution Magazine's website. The article covers the breadth and depth of Gareth's work, including the Rare Care Centre, those living with an undiagnosed rare disease, Lyfe Languages, exploring the possibilities of technology, while also acknowledging its limitations. Gareth shares, "My motivation has always been to ensure no one is left behind—especially those living without a diagnosis. For me, it's a matter of equity and human rights: building systems that not only strive for answers but support every individual and family along the way. The greatest impact comes from holistic multi-disciplinary approaches and a commitment to care, so we can provide dignity, recognition and hope for those navigating care."

RVA Online Education

RVA's online education complements RVA’s Education Program and contains courses exclusively available to RVA Partners and courses available to everyone. Once you have successfully completed a course, you will receive a certificate. You'll need to login or register via the website to access the courses.

At the end of 2025, Research Australia, in collaboration with the National Centre for Epidemiology and Population Health at the Australian National University (ANU), launched Australia’s first national recognition framework to support the consistent and equitable recognition of consumer contributions to health and medical research. Download Recognising Consumers' Contribution to Health Research.  The framework includes guidance on remuneration as well as non-financial forms of recognition. 

As the national peak body for Australians living with a rare disease, RVA welcomes the release of the national recognition framework. Additionally, we congratulate Research Australia, ANU, and the consumers and researchers who contributed to its development. RVA encourages researchers, institutions and consumer organisations to read and apply this framework to ensure greater consistency, equity and diversity of consumer involvement in research moving forward. Read more about the framework at RVA's website.

RVA acknowledges the National Health and Medical Research Council (NHMRC) and Consumers Health Forum of Australia (CHF) on their extensive consultation and welcomes the culmination of sector feedback in the Consultation Report for the Review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research (2025) (Consultation Report). RVA is pleased to see key themes from the feedback we provided as the national peak body for Australians living with a rare disease reflected in the Consultation Report. For more background information and the feedback incorporated, visit RVA's website.

Rare diseases affect an estimated 6-8% of the European Union's population. An in-depth analysis has been published that presents the findings of the public consultation on rare diseases conducted by the European Parliament in March 2025 to inform the forthcoming work of the Committee on Public Health. Download the in-depth analysis at the European Parliament’s website. You can also download this infographic based on the analysis.

Rare Awareness Rare Education (RARE) Portal

Australia's Growing National Resource for Rare Diseases

The RARE Portal is a living website in ongoing development, with new information added regularly. It contains verified rare disease information and resources, customised for the Australian context. Funded by the Australian Government, the RARE Portal is a key deliverable of the National Strategic Action Plan for Rare Diseases.

RARE Portal eNewsletter

Read the December 2025 RARE Portal eNewsletter. You can subscribe to receive upcoming RARE Portal newsletters by completing this form.

Multi-Stakeholder Consultation Process

The RARE Portal consultation process is ongoing and will include individual interviews with RVA Partner organisations in 2026.

Additions to the RARE Portal

• Arachnoiditis

• Branchio-oculo-facial syndrome

• Coffin-Lowry syndrome

• Cogan syndrome

• Dandy-Walker malformation

• Familial adenomatous polyposis (FAP)

• Marfan syndrome

• Stiff person spectrum disorder

• Superior mesenteric artery syndrome (SMAS)

• Von Hippel-Lindau disease

All rare disease stakeholders are invited to help maintain the currency and accuracy of information on the RARE Portal. If you would like to contribute content or suggest a revision, please reach out to the RARE Portal team via the Contribute page.

The Rare Disease Project ECHO® Clinical Community of Learning Practice is a continuing professional development activity delivered via interactive webinars. The initiative is a collaboration between Rare Diseases NSW and RVA, bringing together clinical, research and lived experience expertise. The webinars start with a presentation on a specific topic from an expert. This is followed by reflective discussion, which all participants are encouraged to join. The next session, Whole-Person Care: Practical Mental Health Tools for Rare Disease Patients and Families, is on 3 February 2026 at 6pm AEDT. See the full schedule of sessions on RVA's website. Register to attend via this web page.

Note: Rare Disease Project ECHO® is an RACGP-approved CPD activity. However, the sessions are valuable for all health professionals. 

RVA Receives 2026 Sawatzky Cup Donation of Over $10k 

Image credit: Scotty's Media

The Sawatzky Cup tennis tournament took place on 10 January 2026. The donation of over $10,000 will help RVA to continue overseeing the collaborative implementation of the National Strategic Action Plan for Rare Diseases. RVA thanks tournament organiser, Norman Burns, and all others involved, for this generous donation to RVA.

The RARE Helpline provides service navigation support for rare and complex diseases. It aims to provide timely access to information and answer key questions people living with a rare and complex disease often face.

Contact Information and Hours

Phone: 0499 549 629
Hours: Monday to Friday 9am – 5pm (AEDT)

Note: In the event of an emergency, call an ambulance on 000 or these support lines:

• Suicide Call Back Service – 1300 659 467

• Lifeline 24-hour counselling – 13 11 14

• 13Yarn - 13 92 76

Important Update

From 14 February 2026, the RARE Helpline will cease operating. Ahead of this date, RVA is drawing on the learnings from the RARE Helpline specifically and The Navigator Project more broadly to develop a RARE Help page that will be housed on the RARE Portal and will replace the existing RARE Helpline page. Visit the RARE Helpline web page for more information.