About Us & Our Vision
The Global Angelman Syndrome Registry is an international, caregiver-led initiative designed to benefit individuals diagnosed with Angelman syndrome and those working to create a better future.
We believe that to accelerate learning, inform research, and help design clinical trials, there needs to be a large, high-quality, and accessible collection of data. That’s why the Registry exists — to bring families, researchers, clinicians, and advocates together in a global effort to advance care and uncover treatments.
Through a secure online platform, parents and caregivers from around the world contribute valuable information about diagnosis, symptoms, development, medications, and more. By sharing their lived experiences, they help shape a powerful resource that enables collaboration, reduces duplication, and fast-tracks scientific progress.
Our vision is a world where everyone with Angelman syndrome — no matter where they live — has access to the best possible care, support, and therapeutic opportunities. Together, we’re turning lived experience into research-ready data, and data into hope.
Mission
The Global Angelman Syndrome Registry brings together information about people living with Angelman syndrome around the world, contributed by the families and caregivers who know them best.
Our mission is to turn this lived experience into high-quality data that can improve care, support research and clinical trials, and help develop and evaluate new treatments.
Registry data can support researchers, clinicians, biotechnology and pharmaceutical companies, healthcare organisations, Angelman organisations and policymakers, with access managed through appropriate privacy and governance processes.
By making better use of information families have already provided, we can also reduce duplication and the burden of repeatedly collecting the same information.