Health needs, appointments, relationships, work, caring, costs and uncertainty can all become part of life. What matters most may also change over time.
Here you can find practical information, support and ways to connect.
We are developing this page with the help of people living with rare, genetic and undiagnosed conditions, parents, carers and rare condition organisations. We will continue to add information and resources.
For now, browse the topics below. If there is something you would particularly like to see included, please let us know.
You do not need to work through these in order. Start with what is most relevant to you now.
Find information about support for everyday needs, choosing services, the NDIS and bringing health and support information together. A confirmed diagnosis is not always required.
Rare and undiagnosed conditions can affect emotional wellbeing in many ways. Find information about uncertainty, grief, exhaustion, medical trauma and getting support when it is difficult to know what to ask for.
Find services that may help with costs, travel, work, caring responsibilities and other practical pressures.
Find information about genetic carrier screening, testing during pregnancy, reproductive options, fertility care and pregnancy or baby loss.
Look for condition-specific organisations, broader rare disease communities and individual connection. You do not need an exact diagnosis match to find people who understand.
Find information and resources for adults, children and families living with an undiagnosed condition, including support while you continue looking for answers.
The RareMinds Wellbeing Hub has practical information about the emotional impact of living with a rare condition. It covers different points and experiences, including diagnosis, healthcare, uncertainty, relationships and day-to-day life.
Visit the RareMinds Wellbeing Hub →
These national resources have been developed by Rare Diseases NSW with people living with rare and undiagnosed conditions, families and health professionals.
Rare Disease Passports help bring important health information, support needs and preferences together so they can be shared more easily with healthcare teams.
A Path Without a Name is a guide for parents and carers of undiagnosed children. It brings together information about looking for answers, healthcare, practical support, family wellbeing and everyday life.
Search the GAA Support Services Directory for organisations and services across Australia. You can browse by the type of support you need and where you live.
Search the Support Services Directory →
Sometimes the hardest part is knowing where to begin.
The Genetic Health Navigator provides information and support for people and families affected by rare, genetic and undiagnosed conditions. We can listen to what is happening, help you find relevant information and services, and talk through possible next steps.
Contact the Genetic Health Navigator →
Genetic Alliance Australia provides general information and support. We do not interpret individual genetic results or provide medical or mental health care.
Genetic Alliance Australia provides general information and support. Our information and Genetic Health Navigator service do not replace medical advice. We do not diagnose conditions, provide medical advice, recommend or interpret genetic testing or results, or make decisions about your healthcare. Please speak with an appropriate healthcare professional about your individual circumstances.
