About
The Global Angelman Syndrome Registry is a global, family-powered resource designed to improve the lives of people living with Angelman syndrome.
Parents and caregivers contribute information about diagnosis, health, development, behaviour, treatments and everyday experiences. By collecting this information over time, the Registry builds a richer understanding of Angelman syndrome across the lifespan.
This information can support better care, research and clinical trials, and help researchers, clinicians and treatment developers work towards new and improved therapies.
History
Angelman syndrome is rare and can affect people differently throughout their lives. Individual clinics and studies often see only a window into a person’s experience.
The Global Angelman Syndrome Registry was established to bring together information from families around the world and across the lifespan. By collecting information over time, we can better understand the diversity of Angelman syndrome, identify patterns and needs, and build a more complete picture of how the condition changes throughout life.