This caregiver powered tool helps families, clinicians, researchers and pharmaceutical companies better understand AS. By collecting and sharing important information about how the condition affects individuals, the registry plays a key role in preparing for clinical trials and ensuring families can access potential treatments faster. The Global Angelman Syndrome Registry is part of Pillar Four of our Roadmap to a Cure, focused on getting the Angelman community ready for groundbreaking therapies through global collaboration and research.

asNavigators is an important FAST AU-funded initiative to transform how families affected by AS access care. The goal is that through the network, three Clinical Nurse Coordinators based at multidisciplinary clinics in Melbourne, Sydney, and Brisbane act as a vital conduit between leading experts and local healthcare providers. Their role is to support families while also upskilling local clinicians, ensuring that more children and adults with Angelman syndrome receive expert-informed care, no matter where they live.

The future of this initiative relies on funding and the generosity of our supporters. With your help, we can continue bridging the gap between specialists and local care teams, giving more families the guidance they need while reducing unnecessary emergency visits.

Many individuals with AS remain undiagnosed or are diagnosed later than they should be, which delays access to essential care and potential treatments. One of our key goals is to develop an initiative aimed at improving the identification and diagnosis of Angelman syndrome. By doing so, we hope to ensure that more families receive the support they need as early as possible, giving them the best chance for timely care and intervention. This initiative is a vital step in improving outcomes for children and adults with Angelman syndrome across Australia.

Our goal is to empower families affected by AS through education, ensuring they have the knowledge and resources to make informed decisions about their loved ones' care and treatment. This includes hosting conferences, such as our upcoming event in Sydney in 2025, where world-class researchers and industry leaders will come together to share the latest advancements in AS research and therapeutics. Alongside these large-scale events, we are also committed to local initiatives like Science in the Pub, which offer families accessible opportunities to learn about clinical trial involvement, the genetic causes of Angelman syndrome, and the latest therapeutic approaches. By providing families with the tools, they need to understand the science and make informed decisions, we aim to empower them to actively participate in their loved ones' care and the search for potential treatments.