Germany: SOS Desmoid

Organisation Profile

sos-desmoid was founded as a charitable organization on 21st November 2009 in Mannheim, Germany. It was initiated by Prof. Peter Hohenberger (an oncologist and researcher of desmoid tumors) of the university of Mannheim and Miss Anja Herrmann (a psychologist) from Berlin and several students of psychology and medicine who contacted desmoid patients wth the intention of discovering their wishes and aims, A website, www.sos-desmoid.de was created, medical information made available, and pan-european cooperation between patient organisations and committed patients was established.

In November 2009 Christina was elected as the Chairman of the Board, and was joined by Mrs Sandra Brandt and Mr Rudi Engelhart, elected as Board Members. Mrs Martina Wandhoff is to support the organisation with psychological advice.

The major aims of our organisation are:

• to be a resource for patients and relatives
• to facilitate the contact between affected persons
• to support interaction and cooperation with medical experts
• to build up contacts with other patient organizations, home and abroad as with our friends from France: sos-desmoide.
• to raise the public profile of sarcomas/desmoids

Planned activities

• to build up regional patient groups
• to discover the needs of our patients and their relatives through discussion and questionnaire
• to organize patient meetings with experts
• presentation of medical information in flyers, brochures and on www.sos-desmoid.de in several languages
• to educate the public about desmoids
• to develop cooperation with oncologists, psychologists and physiotherapists
• to develop international contacts with experts and patient organisations