How we display data

This map shows aggregated, de-identified data from the Global Angelman Syndrome Registry. No personally identifiable information is displayed.

To protect the privacy of individuals and families, we apply minimum thresholds when displaying data. In simple terms, if there are fewer than 10 people in a group, we don’t show the exact number. Instead, this may appear as “<10” or be combined into a larger region (for example, state to country, or country to continent).

This approach is guided by international data protection laws, including GDPR, which focus on whether someone could reasonably be identified when data is combined with other information. While a small number (for example, 1 person in a country) may seem anonymous, in rare conditions like Angelman syndrome, individuals and families are often known within clinical and community networks. This means very small numbers can increase the risk of someone being identified, even without names or personal details.

By applying consistent thresholds across all regions and views, we reduce this risk and ensure data is shared responsibly, while still providing meaningful insights to support awareness, research, and planning.