Australians living with a rare neurological condition will co-lead new Curtin University research aimed at improving healthcare and support services.
Intracranial hypertension (IH) affects up to 4500 Australians and sees pressure build around the brain, leading to severe headaches, vision problems, fatigue and cognitive difficulties.
Recent research has found more than 80 per cent of people with IH believe doctors lack adequate knowledge of the condition, while more than 90 per cent report having no access to coordinated multidisciplinary care.
Curtin researcher Dr Kelly Moes will aim to address this by leading a one-year project made possible through the National Disability Research Partnership's 2026 Research Funding Round.
The research will bring together people living with IH from around Australia, including regional and remote areas, working alongside researchers to identify their biggest challenges and develop priorities for future action needed to improve care and support for people living with IH in Australia.
Dr Moes, who also lives with IH, said the project would ensure people with firsthand experience of the condition had a meaningful role in shaping future research.
"People with intracranial hypertension often find themselves navigating a complex and life-changing condition without the support they need," Dr Moes said.
"Many tell us they feel unheard by healthcare systems and overlooked in research.
"This project gives people living with the condition the opportunity to identify the issues that matter most to them and help shape solutions."
Working with peer-led support and advocacy group IH Australia, the research team will identify gaps in healthcare and support services, producing recommendations that could help guide future research, policy and clinical care.
National Disability Research Partnership CEO Mary Sayers said the project reflected the importance of investing in research shaped by people with disability and focused on issues that matter to their lives.
"People with disability bring essential knowledge about where systems are working, where they are falling short and what needs to change," Ms Sayers said.
"This project puts people living with intracranial hypertension at the centre of identifying priorities for research, healthcare and support."
The project will also create a plain-language report so findings can be easily shared with the community.
Yvonne, who lives with IH, said the study was an important first step.
"IH is invisible, but we are not," Yvonne said.
"There is so little research on IH that actually reflects what it is like to live with it.
"A lot of us spend a lot of time trying to get the right support at the right time; we need to be believed and have support tailored to our needs."
Professor Katie Ellis from Curtin's Centre for Culture and Technology said people living with disability were increasingly calling for a greater say in the research that affects their lives.
"The people who live with a condition every day are often best placed to identify where systems are falling short and what changes could make the biggest difference," Professor Ellis said.
"By putting lived experience at the centre of this research, we're creating evidence that can help improve care and support for people with intracranial hypertension while also providing a model for other rare and overlooked conditions."
