Angelman Syndrome Support UK & Ireland (ASSERT)

ASSERT (Angelman Syndrome Support Education and Research Trust) is the UK and Ireland national charity for Angelman syndrome — a rare neurodevelopmental disorder caused by loss of maternal UBE3A gene function on chromosome 15q11-q13, affecting approximately 1 in 15,000 births and characterised by severe developmental delay, lack of speech, ataxia, and a characteristic happy demeanour. ASSERT provides family support workers, an annual residential family weekend, educational materials, and funds research into emerging Angelman-specific therapies including antisense oligonucleotides (ION582, RO7248824). The charity is a founding member of the Angelman Syndrome Alliance European consortium.

The organisation began in 1986 as the Angelman Syndrome Support, Education and Research Trust (ASSERT), established to connect families and caregivers of people with Angelman syndrome, a rare neurogenetic disorder.  Over time it evolved into AngelmanUK, a UK-based support group run largely by volunteers with direct experience of Angelman syndrome.  The rebranding reflects a broader focus on national visibility while continuing ASSERT’s original mission.

AngelmanUK’s objectives include providing information packs and practical guidance for newly diagnosed families, ongoing advice for parents, carers and professionals, and building links with similar Angelman organizations worldwide.  It maintains a family register to connect households for mutual support, organises regional meetings and family conferences, and funds or co-funds research into the causes and management of Angelman syndrome.