Angelman Community

There are 500,000 individuals living with Angelman syndrome worldwide, and 13,500 are in Brazil.

This estimate is based on the prevalence of one individual with Angelman Syndrome for every 15,000 live births.

To locate everyone living with Angelman syndrome, both nationally and globally, it is necessary for affected families to fill out registries created by Angelman patient organizations.

Due to General Data Protection Regulations in various countries, personal data collected cannot be shared among different Angelman patient organizations. Therefore, unfortunately, the families need to register on multiple different platforms.

Registries within Brazil

Registro Instituto Cure Angelman

https://www.facebook.com/cureangelmanbrazil

https://www.instagram.com/institutocureangelman

Its purpose is to create a database of individuals with Angelman Syndrome for Brazilian families interested in the process of clinical studies that may be conducted.

Cadastro Angelman Brasil

https://angelmanbrasil.org.br/cadastro

Its aim is to conduct a census and map people with Angelman Syndrome in Brazil.

International Registries

FAST Seach and Rescue

https://angelmansearchandrescue.org/

Available in Brazilian Portuguese, English, Spanish and other 20 languages.

The FAST Search & Rescue aims to identify all individuals living with Angelman syndrome worldwide. This global initiative was started by the FAST Australia. It is supported by dozens of international affiliates and a team of renowned national and international doctors and diagnostic and genetic specialists. Its goals are to:

Build a robust and centralized data sample that allows for a true understanding of the prevalence of this disorder in different geographic locations around the world.
Provide support and education to the global community.
Ensure that pharmaceutical industry partners understand where this population resides, on a global level.
Facilitate the understanding of the natural history of the syndrome in different geographic locations around the world.

GASR - Global Angelman Syndrome Registry

https://www.angelmanregistry.info/

The platform has been fully translated into Brazilian Portuguese, English, Spanish, Italian, Polish, Hindi and Chinese.

After registering with FAST Search and Rescue, you will be invited by email to fill in very detailed information from the Global Registry platform.

ASF Ladder (Linking Angelman and Dup15q Databases for Expanded Research)

https://www.angelman.org/as-research/ladder/

Available only in English (but you can use the automatic translator in your internet browser for an approximate translation into other languages).

LADDER is a database that gathers information on Angelman and Dup15q syndromes, collected from sources worldwide, including:

The Natural History Study of Angelman
Patient visits to ASF Clinics in the United States
Research studies conducted on Angelman Syndrome and Dup15q
Global Registry of Angelman Syndrome

FAST LatAm (Latin America) Registry

https://cureangelman.lat/registrate

Available only in Spanish (but you can use the automatic translator in your internet browser for an approximate translation into other languages).

It aims to connect the Latin American community and provide updates about the latest news and events from FAST LatAm.

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