Blasenekstrophie

Selbsthilfegruppe Blasenekstrophie / Epispadie e.V. is a Germany-wide self-help association for people affected by bladder exstrophy, epispadias, or cloacal exstrophy, and for parents of children with these congenital urogenital conditions. With more than 300 members, the organization provides information, peer support, and advice to individuals and families navigating diagnosis, treatment, and life with these conditions.

The association’s website offers educational resources on the conditions, their history and frequency, treatment and surgery, genital reconstruction, and health-related quality of life. Visitors can also find a glossary, literature, medical aftercare materials, forms, links, and information for parents and physicians. Member resources include newsletters, personal accounts, and archived medical presentations.

The group organizes events and opportunities for members to connect, including an annual meeting, adult workshops, youth seminars, and children’s seminars. It also provides contact by phone and email, with scheduled telephone consultation hours. The association is a member of ACHSE, the Alliance for Chronic Rare Diseases, and Kindernetzwerk, and is connected with CURE-Net.