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 was developed in response to the need for a significant set of global data on individuals diagnosed with Angelman syndrome. The Registry is unique in that it is caregiver initiated and does not require the participant to attend specialised clinics to participate in the collection of data, allowing families to join from wherever they live in the world. Our vision is to make our data accessible to anyone who has an interest in pursuing positive outcomes for individuals with Angelman syndrome. Data sharing and collaborations with existing and new data collections aim to eliminate unnecessary data entry burden on caregivers.
