Support organisations
Connecting families, advocates, health professionals and researchers through shared care and support.
Rare Diseases NSW is built on the principles of Care, Connect, Cure. We believe that meaningful progress happens when we come together — families, advocates, health professionals and researchers — united by compassion and a shared purpose.
Support organisations
Our Friends are the many incredible organisations and advocacy groups who walk beside us in this mission. Together, we support families through every stage of their rare disease journey, strengthen networks of connection, and champion research and awareness that move us closer to better treatments and brighter futures.
An independent, family-led not-for-profit organisation in Australia supporting families raising children with disability, developmental delay, rare or genetic conditions, or medical complexities. They offer free peer-support groups, one-on-one guidance, workshops, webinars, an online community and a comprehensive resource library.
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A national not-for-profit organisation supporting individuals and families affected by rare or undiagnosed genetic conditions throughout Australasia. They provide peer-support networks, condition information, advocacy, referrals, seminars, education days and rural outreach programs.
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A volunteer-run charitable organisation supporting people affected by 22q11.2 Deletion Syndrome and related 22q duplications. The organisation connects families, educators, health professionals and researchers and provides resources, local contacts and peer-support networks.
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An Australian-based not-for-profit organisation supporting individuals affected by mutations in the CASK gene and related neurological disorders. The foundation supports research, improved diagnostics, treatment development and connection for families.
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A charitable organisation run by parents in Australia, supporting individuals and families affected by SCN2A-related disorders, including genetic epilepsies, autism, disability and other neurodevelopmental conditions. They provide education, resources, connection and support research and treatment development.
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A volunteer-governed Australian charity supporting individuals diagnosed with SATB2 Associated Syndrome and their families throughout Australia, New Zealand and the Asia-Pacific region. The organisation builds community, supports advocacy and raises awareness of research.
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Saving Sasha is an Australian family-led initiative built on a simple belief: from one to many. What began as a mission to develop a world-first personalised RNA therapy for Sasha, a young girl living with an ultra-rare form of SLC6A1-related genetic epilepsy, has grown into a broader movement to change the future of rare disease.
Working alongside leading scientists, clinicians and researchers, Saving Sasha is accelerating precision genetic medicine while championing earlier diagnosis through Whole Genome Sequencing, increasing awareness of genetic epilepsies and advocating for equitable funding.
Visit websiteIf your organisation would like to collaborate with us and become one of our Friends — we’d love to hear from you .
Genetic webinar series
Information and reassurance for families navigating a genetic diagnosis.
Explore the webinar seriesBelongside Families has partnered with Genetic Alliance Australia to produce a webinar series to help families make sense of the genetic testing process and the emotional and practical realities of raising a child with a genetic condition.
You will hear from clinical experts and the personal experiences of parents as they share insights and practical advice. Whether you’re just beginning to ask questions or supporting your child with a known genetic condition, you’ll find knowledge and reassurance to help you navigate the journey ahead.