Living with a rare condition can be lonely in a very particular way. The people around you may care deeply, but still not understand the appointments, the uncertainty, the late-night searching or how tiring it is to keep explaining. Meeting someone who already understands even part of that can make a real difference.
Some people take great comfort in finding others straight away. Community can bring information that is hard to find elsewhere, people to compare notes with and the relief of not having to work everything out alone. Others need time to take in a diagnosis or the fact that there are still no answers. Connecting with others can happen on your terms and may begin with just asking a support organisation for information. You do not have to join a group or share your story before you are ready.
When a condition is ultra-rare, newly described or still undiagnosed, finding someone with exactly the same diagnosis may be difficult. Meaningful connection can still come from a condition or umbrella organisation, an international group, people with a similar genetic finding, the disability community or one person who understands what you are dealing with now.
A group that helps one person may not help another, and what feels useful now may be too much at another time. You can mute it, leave it or come back later.
You may know the condition name, have a gene or chromosome finding, still be seeking a diagnosis, or have already searched without finding a group. The links below can help you decide where to look next.
Search for an Australian organisation or support group connected with the condition.
A gene name, chromosome change or copy number variant may help you find a relevant organisation or family network.
The condition may have another name, sit within a broader community, be represented overseas or have an informal network.
Sometimes a one-to-one conversation may feel more comfortable than joining a group. GAA may be able to connect you with someone who shares a similar condition, genetic finding or experience.
If there is an Australian organisation for your condition, it may provide locally relevant information, support and opportunities to connect with others.
Genetic Alliance Australia’s Support Group Directory includes organisations and groups supporting people and families across genetic and rare conditions.
Find evidence based Australian rare disease information and links to organisations and support pathways.
A variant of uncertain significance, sometimes called a VUS, is not a confirmed diagnosis. A genetics professional can explain what the result means and which terms may be appropriate to use when looking for information or support.
Not every condition has a dedicated Australian organisation. International organisations may provide valuable information and connection but healthcare systems, available treatments, privacy protections and terminology may differ from Australia. Check what applies to your circumstances.
Unique supports people and families affected by rare chromosome and gene disorders. It provides information and may be able to connect members with others who have the same or a similar genetic finding.
Unique does not cover every type of genetic condition. Check their membership information to see whether this group is relevant for you.
Global Genes offers a free international service that helps people affected by rare or undiagnosed conditions find information, organisations and other sources of support.
Search the US-based National Organization for Rare Disorders directory of rare disease organisations and resources. Some organisations support people internationally.
RareConnect was retired in December 2023. Its former communities remain available as a read-only archive, so older discussions may still help you identify condition names, organisations or questions that other people and families have raised.
You cannot post, start a new discussion or contact members through the archive. Information may be outdated, so confirm anything important with a current organisation or healthcare professional.
People feel ready to reach out at different times, and different kinds of connection may feel manageable at different stages. You may feel comfortable contacting an organisation but not yet ready to speak one-to-one. A large community may feel overwhelming, while a quieter connection with one person or family may feel easier.
You may also want time to take in new information, especially when a diagnosis or genetic finding is new, the future feels uncertain, or there are few or no current signs or symptoms.
There is no right time or way to connect. You can look around quietly, join a group without posting, reach out when you feel ready, or step back and return later. Go at your own pace and choose what feels right for you.
Some people may prefer one-to-one contact, particularly when a diagnosis is new, the condition is exceptionally rare, there is no established organisation or joining a large group feels overwhelming.
GAA may be able to explore a connection with someone living with the same condition, a related genetic finding, similar needs, a comparable life stage or uncertainty without a diagnosis.
You can tell us what matters most to you, including preferences around life stage, family role, location, language, accessibility and how you would like to communicate. You can also tell us what you would prefer not to discuss.
An exact match is not always possible. Any connection through GAA is voluntary. We contact each person separately and only share contact details with everyone’s agreement. You remain in control of whether and how the connection continues.
Some communities focus on a particular type of genetic finding or a shared experience, such as living without a diagnosis. These options will not be relevant to everyone, but they may provide a more direct path to connection for some people and families.
Unique is a UK-based international charity supporting people and families affected by rare chromosome disorders, copy number variants and some single-gene disorders associated with intellectual disability or developmental delay.
Unique provides information and may be able to connect members with families who have the same or a similar genetic finding. Its international network includes a substantial Australian membership.
Its matching can consider related genetic findings, medical or developmental needs and location. This may be valuable even when a person’s particular genetic finding appears to be unique.
Unique does not cover every type of genetic condition, including mitochondrial or metabolic disorders. Check its membership information to see whether its network is relevant to your genetic finding.
For some ultra-rare conditions, a Facebook group or another informal online community may be the only place where people have found one another. These groups can provide understanding, practical knowledge and connection across countries but there are some important things to consider before joining.
It is reasonable to observe without posting, turn off notifications, avoid topics you are not ready to discuss, take a break, contact a moderator, report concerning content or leave a group.
Reading about other people’s experiences can bring unexpected feelings, including fear, grief or distress. Another person’s experience does not predict what will happen to you or your family member. It is okay to step back and seek support if you need it.
Online groups differ in purpose, membership, activity and moderation. Rare Voices Australia’s detailed guide explains different types of peer and community support, what to consider before joining, and how to decide whether a group feels useful and safe for you.
Rare conditions can affect people differently, including people with the same diagnosis or genetic finding. Discuss decisions about testing, treatment or care with healthcare professionals who understand your circumstances.
Finding a condition organisation or another person with a similar experience may be one part of the support you need.
You or your family may also be looking for help with disability, caring responsibilities, emotional wellbeing, education, work, relationships, changing independence or navigating health and support systems. You do not need to wait for a diagnosis before seeking these forms of support.
Belongside Families is an Australian family-led not-for-profit for parents and carers raising children with disability, developmental delay, autism, rare or genetic conditions. It offers parent groups, one-to-one support, workshops, webinars, programs and practical resources.
Raregivers provides emotional wellbeing resources and opportunities for connection for people living with rare, chronic and complex conditions, carers and professionals around the world.
Peer connection can reduce isolation, but it does not replace professional mental health support when this is needed. GAA’s Support Services Directory can help you explore relevant services.
A rare condition can affect far more than health. These pages bring together information about emotional wellbeing, disability support and the financial and practical parts of life.
Sometimes a person wants to find someone with a similar genetic result because their diagnosis is uncertain or the gene has not previously been clearly linked with a condition.
Clinical and research matching is different from peer support. Genetics teams and researchers may use secure systems to compare genetic and health information across cases. Research matching may identify a scientifically relevant case without creating a personal connection between the people or families involved. A possible match does not automatically confirm a diagnosis.
Professionals can make it easier for a person or family to search accurately, prepare for connection and find support that reflects what matters to them.
These can include diagnostic uncertainty, limited evidence, changing expectations, medical trauma, isolation and grief that is not always recognised. Peer support can compliment, but does not replace, appropriate healthcare or mental health care.
Help people find current, relevant support by adding a new organisation or telling GAA when an existing listing needs to be updated.
GAA is an umbrella charity, not a health service. We can help people explore condition organisations, broader communities and individual or family matching, but we do not provide medical advice or guarantee that an exact match will be available.
