The Global Angelman Syndrome Registry brings together information contributed by families around the world. By sharing information about life with Angelman syndrome, families help researchers better understand the condition, the needs of the community and how those needs change over time.
Whether you are joining for the first time or updating an existing account, your contribution matters.
⇒ Visit the Registry to register or update your information
What is the Global Angelman Syndrome Registry?
The Registry is an online platform where parents and caregivers can share information about their loved one with Angelman syndrome.
This information helps build a broader picture of the condition, drawing on the experiences of individuals and families worldwide. Registry data can support research into Angelman syndrome and help inform clinical care and the development of future therapies.
A shorter, simpler Registry
Updated September 2026
The Global Angelman Syndrome Registry has been redesigned to make it shorter, simpler and easier to keep up to date.
The changes were developed in consultation with families, leading Angelman syndrome clinicians, researchers and industry partners. The updated Registry focuses on the information that matters most for research and the Angelman syndrome community.
For families, this means a more streamlined experience when entering or updating information.
Already registered? Log in and update your information
Your existing account and historical data have been retained.
Some information within the Clinical Module has been archived as part of the redesign. When you next log in, you may therefore be asked to provide updated information about your loved one’s current situation.
The Registry team is encouraging families to:
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Log in to their existing account.
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Explore the updated Registry.
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Review and update any relevant sections.
Keeping your information current helps the Registry reflect your loved one’s experiences and needs today.
⇒ Log in to the Registry
How does FAST’s Search & Rescue Initiative fit in?
FAST’s Global Search & Rescue Initiative was established to identify and connect individuals living with Angelman syndrome around the world, helping build connections between families and research opportunities.
The initiative is now integrated into the Global Angelman Syndrome Registry, bringing these efforts together through one platform.
This supports the shared goal of building a better understanding of the global Angelman syndrome community and helping identify potential participants for research and clinical trials.
Joining the Registry does not guarantee eligibility for, or access to, a clinical trial.
Why your contribution matters
Every person with Angelman syndrome has their own experiences, strengths and challenges.
By contributing to the Registry, you help researchers learn from those experiences. Information shared by families can help identify patterns, highlight community needs and guide future research questions.
Regular updates are valuable too. They help build understanding of how Angelman syndrome affects people at different stages of life.
What’s coming next?
The September 2026 redesign marks the beginning of the Registry’s next phase.
Further improvements are planned, including new ways for families to view and understand the data they contribute, and new ways for Registry data to be used and reported to support research, clinical care and future therapies.
The Registry team will share further developments and findings with the community over the coming months.
Take part
If you care for someone with Angelman syndrome, visit the Global Angelman Syndrome Registry to find out more about participating.
You can explore the information about consent and how your data is used before deciding whether to register.
Already taking part? Please log in and check that your information is up to date.
