France: SOS Desmoide France

Organisation Profile

•  Its aim: like most PAGs, it is to develop the awareness of this disease, stimulate research, inform & support patients. It started in 1998.
•  The core of our organisation lies in a team of about ten persons who meet every month. It is worth noting that the association was created by a duo: one patient and one doctor. Still, to-day, this team counts three doctors.
• The patients committee works on communication aspects of our projects and gives their feeling on the shape and the content as well.
• We have a Medical & Scientific Council to advise us on medical and research subjects. Most specialities (oncology, surgery, anatomo-pathology, biology, ?) are represented among its twenty members. They meet at least once a year.
• Support to individuals (patients and relatives) is provided by members of the core team, along with a psychological support offered by two psychiatrists members of the association
• Formalized communication channels are : our web site ; a quarterly bulletin ; and our annual meetings