SoMA eV

SoMA e.V. is a German patient and self-help organisation supporting people with anorectal malformations, Hirschsprung disease and cloacal exstrophy, as well as their families. These rare congenital conditions affect the bowel and, in some cases, the urogenital system, and often involve surgery and individual follow-up care. SoMA connects people who may otherwise feel alone with practical guidance, peer support and specialist knowledge.

The organisation offers personal consultations by phone, video and at events, along with online seminars, regional meetups, workshops and expert conferences. Its programmes serve families, children, young people and adults, addressing topics such as emotional wellbeing, school, independence, everyday life, nutrition, assistive products, sexuality and family planning. The annual conference brings participants together for presentations, discussion and activities for children and young people. SoMA also provides professional training, publishes information and resources, and works with healthcare specialists and networks to improve support and quality of life. People can take part as active or supporting members, while donations help fund seminars and reach more affected individuals and families across Germany.