For people and families affected by rare, genetic or undiagnosed conditions, finding that person is not always easy. There may be no support group for your condition in Australia, or you may still be seeking a diagnosis or living with an uncertain result.
Even when a support group exists, you may not always feel ready to join or reach out, particularly when a diagnosis is new and you are still making sense of what it may mean.
We can help you find a relevant support group or community and, where possible, explore an introduction to another person or family through our Rare Contact database.
You do not need a confirmed diagnosis or to know exactly what kind of connection you are looking for. We can talk with you about what is happening and what may be helpful.
For people and families still seeking answers, a connection may be based on shared experiences of uncertainty, navigating services or supporting someone without a diagnosis, rather than having the same condition.
Tell us a little about the connection you are looking for. We will contact you to talk through the options. We will check with you before approaching anyone about a possible introduction, and only exchange names and contact details if both people agree. Only share what you feel comfortable including here. Please do not share medical reports.
Complete our short connection request form, or contact our Genetic Health Navigator if you would prefer to talk it through.
We may help you find a relevant support group or community, look for a possible one-to-one connection through the Rare Contact database, or do both.
If we identify a possible connection, we will contact that person separately. We will agree with you beforehand what limited information we may use to describe the request.
Names and contact details are only exchanged if both people agree. Either person can decline without needing to give a reason.
For very rare and undiagnosed conditions, a suitable connection may not be available straight away. Sometimes we may not be able to find one. We will be open with you about what we can find.
With your permission, we can keep your request open and contact you if a possible connection becomes available later.
To explore a connection, we will need to collect some personal and health information. We will only collect information relevant to your request and will handle it in accordance with our Privacy Policy.
You can change your preferences or withdraw from future introductions at any time.
Each person’s circumstances are different. What someone else has experienced or found helpful may not be right for you. Peer connection is not clinical advice and does not replace medical care, genetic counselling or professional mental health support. After an introduction, you decide how you communicate, what personal information you share and whether you would like to remain in contact.
GAA asks everyone to respect each other’s privacy, but we cannot guarantee that information shared directly with another person will remain confidential. GAA does not monitor conversations after an introduction.
