info about SoMA []

Who is SoMA [] e.V.?

Support and information for persons with anorectal malformations or Morbus Hirschsprung
SoMA [] e.V. is the german pro-bono organization dedicated to supporting and informing parents with kids, teenagers and adults with the following diagnoses:
Anorectoral Malformation
Morbus Hirschsprung

SoMA [] stands for higher quality of life for the affected persons through exchange with others, positive experiences and cooperation with experts.
Founded 1989 in Munich the organization currently disposes of more than 950 members (July 2016) – mainly parents of affected children, but also a growing group  of adults.

What is an anorectal malformation?

Statistics say approximately every second day a child with an anorectal malformation is born in Germany. Most of these children either have no anus at all or one ending in a wrong location with the consequence that the anus has to be rebuilt or relocated. After this plastic surgery children often have incontinence problems: they might not be able to hold their stool or may have other bowel problems. However, there is a variety of methods available which help to obtain "social continence" to ease participation in "normal life" at kindergarten, school or in the job.

Unfortunately, anorectal malformations in many cases are accompanied by further malformations, for example in the area of the bladder, the sexual organs or the heart.

What is Morbus Hirschsprung?

According to the statistics in Germany almost every second day a child is born with an anorectal malformation of the colon called Morbus Hirschsprung – also known as congenital megacolon, aganglionosis or HSCR. The affected children  have a varyingly long part of the intestinal wall and the inner sphincter muscle where no nerve cells can be located. After resection of the affected parts the subsequent treatment to obtain continence plays an important role.

 

 

What does SoMA [] offer?

Exchange of experiences and contacts
We know how difficult your situation might be and have an open ear for your problems. You will find a protected room for open exchange with other affected persons as well as with experts.

Information material
If you prefer to first read through some information by yourself first or if you are looking for specific information on a certain topic, you will find a whole range of information material – printed and online here.
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Cooperation with experts
All information we offer is created in tight co-operation with science and many medical experts – e.g. from (pediatric) surgery, (pediatric) urology, psychotherapy, physiotherapy and care.

Support for all age groups
SoMA [] delivers advise and active support for children and their families from the beginning. We also accompay children and teenagers as well as adults. Meetings and congresses facilitate the exchange and information on the specific syndrome.

Public Relations
Compared with other syndroms anorectoral malformations and possible consequences as e.g. incontinence are quite rare and not so well known in the public. SoMA [] wants to create a better understanding for the syndrom itself and the SoMA [] members and reach more affected people with the SoMA [] offer.

Increase scientific knowledge
SoMA [] tightly cooperates science and experts from various fields for the benefit of its members. On the other side science also profits from SoMA [] ´s collective experience.

How to become a member of SoMA [] ?

Please download the membership application and call or write to your English speaking contact person. The yearly membership fee is € 70,-.

Photo of Nicole  Schwarzer
Nicole Schwarzer
Korbinianplatz 17
80807 München
Fon:+49 (0)89 14 90 42 62
Fax:+49 (0)89 14 90 42 63
E-Mail:
Sprechzeiten:
Montag bis Donnerstag
zwischen 10.00 Uhr und 17.00 Uhr