Genetic Alliance Australia is developing a new online hub for adults living without a diagnosis, parents and carers of children and young people who are still looking for answers and those affected by ultra rare genetic conditions.
The page is being co-developed with members of the SWAN (Syndromes Without A Name) community, Genetic Alliance Members and others who have walked this path.
It will bring together trusted information, lived experience advice, community connection and practical support for people living without a diagnosis.
Whether you are wondering if something could be genetic, seeking a diagnosis, making sense of testing or looking for support while answers remain uncertain, our Support along your journey hub may help.
Explore Support along your journey →
You do not need a confirmed diagnosis to find community or connect with people who understand some of the uncertainty and practical realities of living without answers.
Support can focus on what is happening now, including health, disability, practical needs and well being, even while you are still looking for answers.
A GAA Genetic Health Navigator can help you find reliable information, relevant services and support, prepare questions and work out where to start.
Rare Voices Australia’s RARE Portal provides steps you can take if you think you, or someone you care for, may have an undiagnosed rare disease.
It covers talking with a GP or specialist about symptoms, developing a potential diagnosis plan, asking about other tests or referrals, and what to consider if you have tried these things and still have no answers. It also links to mental health and wellbeing support and connection with others who have similar experiences.
These national resources have been developed by Rare Diseases NSW with people with lived experience and health professionals to support families of children who are still looking for answers.
A guide for parents and carers of undiagnosed children, bringing together information about finding answers, healthcare, community, practical support, family wellbeing and everyday life.
A practical tool to help families keep important health and care information together and share it more easily with healthcare professionals.
Both the Guidebook and the Passport will be available here soon →
