ANGEL – Associação de Síndrome de Angelman Portugal

The ANGEL – Associação de Síndrome de Angelman Portugal is a non-profit organization established in 2012 with the goal of providing assistance, information, and support to the families of individuals with Angelman Syndrome (AS) in Portugal, as well as to professionals, healthcare workers, researchers, and others interested in this rare genetic condition.

Since its inception, ANGEL has been developing projects and initiatives aimed at addressing knowledge gaps, encouraging and contributing to research on this syndrome, and facilitating access for individuals with Angelman Syndrome and their families to all kinds of information, support, and therapies.

Angelman Syndrome (AS) is a rare genetic condition that results from the absence or imperfection of the maternal chromosome 15. 

It is estimated that the prevalence of Angelman Syndrome is one case per 15,000 to 20,000 people born worldwide. 

In Portugal, ANGEL has already identified more than 90 cases, with the statistical projection suggesting that this number could rise to 500. Despite individuals with Angelman Syndrome having an average life expectancy comparable to the general population, they never achieve autonomy, remaining entirely dependent on others (family members and/or other caregivers) for care and requiring regular monitoring by multidisciplinary teams of healthcare and rehabilitation professionals. 

Angelman Syndrome impacts families, friends, caregivers, and society as a whole.