France: SOS Desmoide France

Contact Information

SOS Desmoide France

45, rue René La Combe, 49 100 Angers, France
Web: www.sos-desmoide.asso.fr
Email : This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Contact Person

Karine le Bobinnec (President)

 

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
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