Self-Help Associations

Due to the encouragement of the self-help groups the CURE-Network was applied. They are involved in the realisation of the CURE-Net agenda.

www.soma-ev.de

www.ekstrophie.de
Every year, approximately 200 children in Germany are born with a malformation of the rectum. These children have a malformed or no anus and sometimes further concomitant malformations. Among occurred operation, the function of the intestine stay a lifelong topic for most children.
As with all chronically, rare diseases the knowledge and the benefit of persons concerned is a valuable resource. The SoMA e.V. association is a self-help organisation for people with anorectal malformations in all German-speaking regions. There are currently 600 members. In addition to providing helpful information to patients throughout the different phases of their lives, the SoMA e.V. organises nationwide and regional meetings, holiday camps, cure and rehab weeks and ambulatory aftercare.		 More rarely, children are born with malformation of the urinary meatus, the bladder or the sexual organs. The exstrophy-epispadia-complex is comprised of the epispadia, the classical bladder exstrophy and the cloacal exstrophy. Despite of modern surgical and urological care, the continence remains a lifelong concern for affected patients. The self-help organisation Blasenekstrophie/Epispadie e.V. is an association run by and for people with this disease and has more than 250 active members nationwide. Like SoMA E.V., it is among the world’s largest professional organisations for these topics. In addition to hosting professional conferences and regional meetings every year and providing helpful personal information, this organisation actively participates in the research of the disease pattern. Should you or your child be affected, you will definitely profit from the personal contact.

 
Together, these two organisations have a combined subgroup for those with the exstrophia of cloaca. This group meets every year for annual conferences and provides information to both organisations. Exstrophy of the cloaca generally involves three organ systems, affecting the urinary tract, genital tract and rectum. It is very rare (approximately 1:300000 children, or 2 children per year in Germany) and is among the most severe malformations to treat.