Collaborative Advocacy

Working together for stronger change

Genetic Alliance Australia works with community organisations, people with lived experience and sector partners to drive change on issues affecting people living with rare, genetic and undiagnosed conditions.

Some issues call for GAA to advocate directly. Others are stronger when communities work together or when we contribute to broader rare disease advocacy.

Depending on the issue, GAA may lead, partner, advise, connect or amplify.

Our advocacy priorities

GAA’s advocacy is shaped by the experiences and priorities of people living with rare, genetic and undiagnosed conditions and the organisations that support them.

We focus particularly on issues that can improve:

access to genetic and genomic healthcare, from screening and testing through diagnosis, reproductive care and ongoing genetics-informed care
pathways to care and support, including what happens beyond diagnosis, transition between services and the needs of adults living with rare conditions
mental health, wellbeing and psychosocial support, for individuals, families and carers
access to advances in research, treatments and therapies, and the systems needed for those advances to reach people
recognition and support for people who remain undiagnosed
more responsive health and support systems, informed by lived experience and the realities of rare disease

Our advocacy also responds to emerging issues raised across our community, particularly where there is an opportunity for collective action or system change.

Collaborative advocacy

Sometimes an issue experienced by one community is also affecting others.

Where there is meaningful common ground, GAA can bring organisations and people together to build a stronger understanding of the issue and advocate collectively for change.

This may involve:

identifying shared priorities
bringing together lived experience, community knowledge and evidence
developing or contributing to submissions, briefings and shared positions
engaging with government, health services and other decision-makers
coordinating or supporting collective advocacy
amplifying agreed messages

The aim is not to replace condition-specific advocacy. It is to add strength where communities are seeking the same change.

For issues that benefit from sustained collaboration, this work may also happen through GAA’s Special Interest Groups.

Working across the wider advocacy ecosystem

Rare Voices Australia

GAA is a member of Rare Voices Australia (RVA), Australia’s national peak body for rare disease, and works closely with RVA to support coordinated national advocacy.

We contribute perspectives and emerging issues from our diverse rare, genetic and undiagnosed communities into RVA’s systemic advocacy, while supporting and amplifying its broader policy and reform work.

Where an issue affects the wider rare disease community, working through or alongside RVA can help strengthen a coordinated national voice.

Link: Learn more about Rare Voices Australia

Key national rare disease frameworks

National Strategic Action Plan for Rare Diseases

Australia’s national framework for improving outcomes for people living with rare disease, with priorities across awareness and education, care and support, and research and data.

Link: Explore the National Strategic Action Plan for Rare Diseases

National Recommendations for Rare Disease Health Care

National recommendations designed to support better healthcare for people living with rare disease, including people who remain undiagnosed.

Link: Explore the National Recommendations for Rare Disease Health Care

GUaRD Collaborative

Through the GUaRD Collaborative, GAA works with Genetic Support Network Victoria across our shared genetic, undiagnosed and rare disease communities.

Together, we can identify common priorities, share community knowledge and strengthen advocacy on issues that cut across conditions and jurisdictions.

Raise an issue or get involved

Some of GAA’s most important advocacy priorities begin with communities telling us where systems are not working.

If your organisation or community is experiencing a recurring barrier, policy issue or gap in care, particularly one that may affect other rare or genetic communities, we want to hear from you.

You do not need a fully developed advocacy proposal or a large organisation behind you.

Tell us:

what is happening and who is affected
what you believe needs to change
whether other communities may be experiencing the same issue
whether there is an upcoming decision, consultation or opportunity
what your community has already tried or learned

There are also different ways to contribute. You might share community insights, join a Special Interest Group, review a submission, participate in a roundtable or support a shared advocacy position.

Small and volunteer-led organisations can participate in ways that reflect their capacity.

We will be clear about how contributions will be used, seek consent before attributing information or experiences, and report back on what happens next.