Our Friends

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.

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.

If your organisation would like to collaborate with us and become one of our Friends — we’d love to hear from you.

Belongside Families is an independent, family-led not-for-profit organisation in Australia that supports families raising children with disability, developmental delay, rare or genetic conditions, or medical complexities.

They help by offering free peer-support groups, one-on-one guidance, workshops and webinars, and a comprehensive online community and resource library — all designed so parents feel informed, connected and confident in their disability-parenting journey.

Genetic Alliance Australia (GAA) is a national not-for-profit organisation supporting individuals and families affected by rare or undiagnosed genetic conditions throughout Australasia. They provide peer-support networks, extensive condition information, advocacy for improved services, and help connect people facing conditions so rare that no support group yet exists.

Key services include an A-Z database of genetic conditions, one-on-one referrals to support groups, condition-specific seminars and education days, rural outreach programs, networking workshops for siblings and support group leaders, and ongoing policy- and research-advocacy efforts.

22q Foundation Australia & New Zealand is a volunteer-run charitable organisation that supports people affected by 22q11.2 Deletion Syndrome (and related 22q duplications) in Australia and New Zealand, providing a community of families, educators, health professionals and researchers.

They help by sharing up-to-date resources (fact sheets, clinical guidelines, education aids), facilitating local contacts and peer support networks, and raising awareness so families don’t feel isolated and can access the information and connections they need.

Angelina CASK Neurological Research Foundation (ACNRF) is an Australian-based not-for-profit organisation established in 2020, dedicated to supporting individuals affected by mutations in the CASK gene and related neurological disorders.

They fund and facilitate high-quality scientific research—such as gene therapy, patient-derived stem cell models and translational projects—to improve diagnostics, help treatments advance, and ultimately work toward a cure, while also providing resources and connection for families.

SCN2A Australia is a charitable organisation run by parents in Australia, dedicated to supporting individuals and families affected by SCN2A-related disorders — including genetic epilepsies, autism, disability and other neurodevelopmental conditions. They help by educating families and professionals about SCN2A, offering resources and connection, and working to advance research and treatments so people affected can live better lives.

SATB2 Connect is a volunteer‐governed Australian charity dedicated to supporting individuals diagnosed with SATB2 Associated Syndrome (SAS) and their families throughout Australia, New Zealand and the Asia-Pacific region.

They help by building a community of families, healthcare professionals and researchers, championing advocacy, awareness and research efforts so no family is left isolated in their rare-disease journey.

Belongside 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