A Word From Rare Voices Australia's CEO

Hi RVA Supporter,

Welcome to the final Rare Awareness Rare Education (RARE) Portal eNewsletter update for 2023. Rare Voices Australia (RVA) was pleased to soft launch the RARE Portal at our Rare Disease Day Parliamentary Event in March this year. The RARE Portal is a living website in ongoing development with new information added regularly. 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 and as I write, 4,000 people have visited the RARE Portal in 2023. Alongside the rare disease sector, RVA looks forward to further promoting the site in 2024.

RVA received $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. This funding is facilitating the extensive multi-stakeholder consultation process to progress RARE Portal development. Additionally, these funds have enabled RVA to consult with peak bodies and other experts to produce several education materials, including resource collections, reports and webinars, for priority populations identified in the Action Plan, including the Aboriginal and Torres Strait Islander community; the multicultural/culturally and linguistically diverse community (CALD); and the regional, remote and rural community. Thank you to the National Aboriginal Community Controlled Health Organisation (NACCHO); the Australian Alliance for Indigenous Genomics; the Federation of Ethnic Communities’ Councils of Australia (FECCA); the Australian Multicultural Health Collaborative; and the National Rural Health Alliance for consulting with RVA to inform these education materials. Scroll down to the article below for the direct links to each of these resources.  

RARE Helpline

The RARE Helpline, which is housed on the RARE Portal and has been operating since July 2023, aims to provide timely access to information and answer key questions people living with a rare and complex disease often face. The RARE Helpline supports people to connect with existing information that is reliable; provides resources that respond to people’s specific needs; helps to increase people’s health literacy and engagement with care and support services; and assists in connecting people with existing health services and/or professionals where possible.

People living with a rare and complex disease are welcome to call the RARE Helpline on 0499 549 629 during Monday to Friday from 9am – 5pm (AEDT). When people call, they’ll be prompted to leave a message and fill out this form on the RARE Portal website, so that our team members have as much information as possible to assist. The RARE Helpline is one of three key components of The Navigator Project, funded by the Department of Health and Aged Care’s Rare and Complex Disease Telehealth Nurse Program grant.

RARE Portal Featured in Healthdirect Australia's Information Partner Newsletter

An article about the RARE Portal was published in Healthdirect Australia's Information Partner newsletter for Spring 2023. The article covers what the RARE Portal is; what's on the RARE Portal; rare disease learning opportunities and education; and how the RARE Portal is being developed. Read the article via Healthdirect Australia's website. RVA is an official Healthdirect Australia Information Partner and Healthdirect Australia's website publishes high quality, evidence-based clinical information. The site attracts visitors from 40,000 websites.

Staffing Update

I would like to welcome two new people to RVA’s team. Evelyn Loh is our Communications and Information Officer and will be working with our Communications Manager and RARE Portal team. Manuel (Manny) Perez is RVA’s new web developer and will be working across all of RVA’s websites, including the RARE Portal.

Acknowledgements

Our RARE Portal team is continuing to reach out to RVA Partner groups/organisations to assist with developing individual rare disease pages. RVA looks forward to continuing to progress the RARE Portal’s development alongside the rare disease sector. We especially thank RVA Partner group/organisation leaders who have shown so much enthusiasm about the RARE Portal and a genuine willingness to work with RVA towards the best outcomes for Australians living with a rare disease.

Finally, on behalf of the entire team at RVA, I wish those who celebrate a Merry Christmas. I hope you all have a lovely break and have time to reflect on what we, as a sector, have achieved in 2023. Stay safe and have a great start to 2024!

Nicole Millis
Chief Executive Officer
Rare Voices Australia

An article about the RARE Portal for rare diseases has been published in Healthdirect Australia's Information Partner newsletter for Spring 2023. The article covers what the RARE Portal is; what's on the RARE Portal; rare disease learning opportunities and education; and how the RARE Portal is being developed. Read the article via Healthdirect Australia's website. RVA is an official Healthdirect Australia Information Partner. Healthdirect Australia's website publishes high quality, evidence-based clinical information, and the site attracts visitors from 40,000 websites.

RVA welcomes Evelyn Loh, our new Communications and Information Officer, to the team! Evelyn comes from a background in clinical trials and healthcare marketing. She holds a Bachelor of Biomedicine and has experience in cancer research. In her previous roles, Evelyn led patient recruitment and communication efforts, coordinating multiple dermatology phase 1-4 clinical trials. Her close interaction with people has provided a deep understanding of the challenges they face in accessing clinical care and treatment. Evelyn is passionate about raising awareness and providing resources through effective science communication and content creation. She is excited to contribute her diverse skillsets and enthusiasm for marketing to drive improved outcomes for the rare disease community.

RVA welcomes Manuel Perez, our new web developer, to the team! Manuel (Manny), an information technology guru, specialises in web and application development with a keen focus on cybersecurity. He also develops systems where a network of devices can communicate and exchange data using the Internet of Things (IoT), machine learning and artificial intelligence technologies. Having contributed his expertise to not-for-profit initiatives in the past, particularly in the environmental and climate sectors, Manny is enthusiastic about leveraging his skill set to enhance RVA’s online presence.

National Strategic Action Plan
for Rare Diseases

The National Strategic Action Plan for Rare Diseases (the Action Plan) was launched in February 2020 by the Minister for Health with bipartisan support. You can access the Action Plan via the Department of Health and Aged Care's website and a suite of summary materials via RVA's website. The RARE Portal is one of the key deliverables of the Action Plan. Development of the RARE Portal has been funded by the Australian Government.

RARE Spotlight

RARE Helpline

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.

The RARE Helpline:

• Supports people to connect with existing information that is reliable
  

• Provides resources that respond to people’s specific needs
  

• Helps to increase people’s health literacy and engagement with care and support services
  

• Assists in connecting people with existing health services and/or professionals where possible

RARE Helpline

Contact Information and Hours

Phone: +61 (0)499 549 629
Hours: Monday to Friday 9.00am – 5.00pm (AEDT)

Recent Additions to the RARE Portal 

• Niemann-Pick Disease Type C (NPC) (rare disease page, co-developed with RVA Partner, Australian NPC Disease Foundation Inc.)

• Pituitary Conditions (group of conditions page, co-developed with RVA Partner, Australian Pituitary Foundation)

• Acromegaly (rare disease page, co-developed with RVA Partner, Australian Pituitary Foundation)

• Disability Support Information (information page)
• Acalvaria (rare disease page)
• DeSanto-Shinawi Syndrome (DESSH) (rare disease page)
• Ataxia-Telangiectasia (A-T) (rare disease page, co-developed with RVA Partner, BrAshA-T Ataxia-Telangiectasia Limited) 
• Eosinophilic Gastrointestinal Diseases (EGIDs) (group of conditions page, co-developed with RVA Partner, ausEE Inc.) 
• Eosinophilic Oesophagitis (EoE) (rare disease page, co-developed with RVA Partner, ausEE Inc.)

Thank you to RVA Partner, ausEE Inc., for codesigning the Eosinophilic Gastrointestinal Diseases (EGIDs) and Eosinophilic Oesophagitis (EoE) pages with the RARE Portal team. ausEE's mission is to improve the lives of those affected by eosinophilic diseases through providing support, evidence-based information, resources, advocacy and by campaigning to raise awareness and funds for research in Australia.

Thank you to RVA Partner, BrAshA-T Ataxia-Telangiectasia Limited (BrAshA-T), for codesigning the Ataxia-Telangiectasia (A-T) page with the RARE Portal team. Families living with BrAshA-T can feel very isolated and alone. BrAshA-T's goal is to change this for families and let them know they are not alone and someone is fighting for their children’s future.

Thank you to RVA Partner, Australian NPC Disease Foundation Inc., for codesigning the Niemann-Pick Disease Type C (NPC) page with the RARE Portal team. The Australian NPC Disease Foundation's mission is to give hope, support and connection to those affected by Niemann-Pick disease type C in Australia.