The tab displays an interactive map that allows you to filter data by genotype, age, sex, and state/city in Brazil. Explore the map by clicking on different options to find the information most relevant to you. To return to the full view, simply click again on the selected item.

Contact : contato@angelmanbrasil.org.br

« The global mapping of Angelman syndrome represents a strategic and collective advance for the entire Angelman community. Built in partnership with international associations, this interactive map brings together, in a collaborative, ethical, and secure way, non-identifiable information about people with Angelman syndrome in different countries, including data by country, states, and cities, as well as general characteristics such as age range, gender, and genotype.

For Angelman Brasil, this mapping is a fundamental tool for planning and institutional strengthening. It allows us to better understand where families are located, identify regions with greater or lesser access to diagnosis, care, and support, and guide awareness efforts, family support initiatives, professional training, and advocacy for public policies in a more strategic, equitable, and evidence-based manner.

From the perspective of the local and international community, the map increases the visibility of Angelman syndrome, strengthens the sense of belonging, and promotes connections among families, associations, researchers, and healthcare professionals. It clearly demonstrates that there is an active and organized global community, encouraging the exchange of experiences and collaborative work toward better quality of life and care.

The data generated through this mapping are also essential for advancing scientific research and the development of therapies. For researchers and the pharmaceutical industry, aggregated and non-identifiable information provides a clearer view of the geographic distribution of the Angelman syndrome population, the existing genetic diversity, and the potential reach of future clinical studies. The more accurate these data are, the greater the likelihood of representative, well-designed research with real impact for families.

In this context, family registration with Angelman Brasil is a critical step. When families register their children with the association, they directly contribute to building increasingly accurate data on the diagnosed population in the country. These records strengthen our representativeness, give greater legitimacy to our actions, and expand our ability to engage with public authorities, the scientific community, and international partners.

In essence, this map is more than a visual tool: it is the result of a collective and collaborative effort, grounded in the trust of families and a strong commitment to privacy, ethics, and transparency. By registering and participating, each family helps build a more accurate picture of Angelman syndrome in Brazil and around the world, contributing to a future with greater knowledge, access, appropriate policies, and hope for our entire community. »

Carol Aguiar, Angelman Brasil’s chairperson