GAA’s Special Interest Groups bring people and organisations together around issues affecting more than one rare, genetic or undiagnosed condition community.
They provide an informal way for GAA partners, people with lived experience and others with relevant knowledge to share insights, identify unmet needs and explore opportunities for collective action.
Special Interest Groups are informal and shaped by the issue being explored. They are not permanent committees and may evolve, pause or conclude as priorities and opportunities change.
A group may be established when:
Depending on the issue, GAA may bring together community organisations, people with lived experience, families, advocates, clinicians, researchers and other relevant contributors.
GAA is currently interested in bringing people together to better understand and help address shared needs in areas including:
Building a stronger understanding of the unmet health, psychosocial, disability, care and support needs experienced by adults living with rare and genetic conditions.
Exploring access, information and support needs across reproductive genetic care, including carrier screening, prenatal diagnosis and IVF with preimplantation genetic testing for monogenic conditions (PGT-M).
Strengthening pathways to information, connection, diagnosis, care and support for people and families living with rare or genetic conditions, including those who remain undiagnosed.
Improving equitable and timely access to genetic counselling and support across the health system, including for people who face long waits, live outside major centres or need support at different points in their genetic health journey.
If you have experience or expertise in one of these areas, or you are seeing another issue affecting multiple rare, genetic or undiagnosed communities, we would like to hear from you.
Your insights can help GAA understand what is happening across communities, identify shared priorities and consider where collaboration or advocacy could make a difference.
