Genetic Alliance Australia works with researchers, clinicians, universities and research organisations to support meaningful involvement of people living with rare, genetic and undiagnosed conditions in research.
Where appropriate, we can help researchers identify relevant community connections, bring community perspectives into their work and explore opportunities for collaboration.
What this looks like will depend on the research, the community and their interest and capacity to be involved.
There is no single rare disease experience.
Some conditions have established organisations and strong research networks. Others may have only a handful of known families in Australia, no dedicated support organisation, or communities dispersed across the country.
People may also be living with disability, significant healthcare demands, caring responsibilities, the mental health and emotional impacts of living with a rare condition, or continuing uncertainty about their diagnosis.
Experiences and needs can change significantly over time, including through different life stages, transitions between services, and for people living with childhood-onset or adult-onset rare conditions.
Community involvement in rare disease research therefore often needs to be thoughtful, flexible and tailored to the people and communities involved.
GAA can help researchers better understand this landscape and, where appropriate, identify pathways for engagement.
Two Australian resources provide an excellent starting point.
Practical guidance for meaningful community involvement in genomic research.
Link: Explore the Involve Australia Guidelines →
Australia’s national framework for meaningful consumer and community involvement in health and medical research.
Link: Explore the NHMRC Statement →
GAA is particularly interested in research that can improve the lives of people living with rare, genetic and undiagnosed conditions.
This includes research that:
Across these areas, we particularly value research that is collaborative, person-centred and meaningfully informed by lived experience.
GAA is a small not-for-profit team and we are not currently funded to provide a dedicated research support service.
Our capacity to contribute will depend on the project, timing, communities involved and resources available.
Where substantial or ongoing involvement is requested, we encourage researchers to consider appropriate resourcing for GAA and for people with lived experience contributing their expertise.
If you are seeking a letter of support, advisory involvement, co-design input or another formal contribution, please contact us as early as possible.
Depending on the project and communities involved, GAA can explore opportunities to support:
Helping researchers identify condition-specific organisations, support groups, community leaders or other networks that may be relevant to their work.
Where another organisation is better placed to lead or advise on community engagement, we can help identify that pathway.
Supporting opportunities for lived experience perspectives to inform research questions, priorities, study design and approaches to participation.
Early involvement can be especially valuable while key decisions can still be shaped.
Providing or facilitating input, where possible, into participant experience, accessibility, recruitment approaches, participant information and communication.
Exploring appropriate ways for people with lived experience to contribute to advisory groups, steering committees, consultations, workshops or co-design.
The right approach will depend on the project, the community and what people are being asked to contribute.
Sharing insights into issues that can cut across conditions and life stages, including diagnosis, genetic healthcare, reproductive care, transitions between services, adult rare disease, psychosocial impacts, emerging therapies and changing needs over time.
Helping researchers consider how research opportunities, progress and findings can be communicated clearly and accessibly, and where appropriate, whether an opportunity may be suitable to share through GAA networks.
GAA does not provide guaranteed participant recruitment or access to communities. Community involvement will always depend on the relevance of the research and the interest, choice and capacity of the people and communities involved.
Meaningful community involvement begins well before a recruitment notice is ready to circulate.
People living with rare and genetic conditions can bring important perspectives on:
Involving community perspectives early can help make research more relevant, accessible and responsive.
It also gives researchers the opportunity to understand whether, how and to what extent a particular community wants to be involved.
No one individual, family or organisation can be expected to speak for an entire condition community.
Community involvement should be meaningful for both researchers and the people being asked to contribute.
We encourage approaches that:
People and community organisations may choose not to participate, or may wish to contribute in different ways. Meaningful involvement respects that choice.
You do not need to have your community engagement approach fully worked out before contacting us.
It can be useful to talk while a research question, grant proposal or project is still taking shape.
When contacting us, please include:
From there, we can explore whether GAA can contribute, help identify another organisation or community connection, or point you towards an appropriate next step.
If you are developing research relevant to rare, genetic or undiagnosed communities, we would be pleased to hear from you.
