Read more about Rare Voices Australia’s (RVA) Rare Awareness Rare Education (RARE) Portal editorial team below. RVA leverages the expertise and lived experience from its entire staffing team and volunteers to develop resources for the RARE Portal. Read more about RVA’s full staffing team on RVA’s website.

The information, links and resources on the RARE Portal are curated via a methodical and purposeful process. This process enables the sharing of information that is up-to-date and from credible sources backed by well-respected experts or governments. Read more about the curation of information and the selection of resources and services listed on the RARE Portal on the About page.

The RARE Portal editorial team distributes a dedicated eNewsletter twice a year.

Read the June 2025 eNewsletter.

Read the December 2024 eNewsletter.

Amanda holds a PhD in Sciences (Genetics) from the University of Adelaide, with a background in scientific research. Her early research focused on Mucopolysaccharidosis Type III (Sanfilippo Syndrome) and the tumour suppressor gene WWOX. She then went on to lead innovative projects developing genetic solutions for the horticultural sector, gaining extensive experience in gene-editing technologies and their practical applications. Having a personal connection to rare disease through her own experience living with myasthenia gravis, Amanda has long held a strong interest in rare diseases—an interest that ultimately led her to move into the rare disease sector. She is passionate about using her scientific expertise to develop and deliver customised, evidence-based information for the rare disease community.

Falak is a former research scientist with a PhD in molecular cell biology from the University of Queensland and postdoctoral experience in hematopoietic stem cell and bone marrow transplant biology at the Mater Medical Research Institute. She has co-authored several publications and has presented her research both in Australia and overseas. Falak paused her research career to care for her daughter who has a rare congenital heart defect and later learned that her youngest son has a rare auto-inflammatory disease. As RVA’s Research and Evaluation Manager, Falak is committed to ensuring that evidenced-based understanding of rare disease drives advocacy and policy reform.

Sarah has a Bachelor of Journalism and over 15 years’ worth of experience working in communications. In addition to publishing a picture book, Sarah has been published in ‘The Huffington Post’, ‘Elephant Journal’, ‘Mamamia’, ‘The Age’, ‘Women’s Agenda’, ‘SBS Online’ and more. Sarah has extensive experience across a range of sectors, particularly in the not-for-profit space. Since joining RVA in 2018, Sarah has been using her skills to benefit Australians living with a rare disease and is dedicated to person-centred communication. As Communications Manager, Sarah oversees RVA’s internal and external communication, while also working on the RARE Helpline.

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.

Lucinda has a background in scientific research. She holds a Bachelor of Advanced Science (First Class Honours) and is a final year PhD candidate and Global Challenges Scholar at the Institute for Molecular Bioscience at The University of Queensland. Her doctoral research focuses on understanding the molecular determinants of pain by combining toxin pharmacology and sensory neuroscience. Lucinda has previously worked on research in developmental genetics and Alzheimer’s disease. She is passionate about using her scientific literacy skills, developed through diverse research experiences, to empower others to better understand the diseases that affect them and their communities.