More information

WELCOME to you

patients & doctors from all countries

This is the website of Association SOS Desmoïde, which is France-based, and whose aims are to break patients isolation, collect and circulate knowledge about the disease, and stimulate research.

  • more on our organisation
  • more about desmoid tumour
  • If you are French speaking, you will be able to get helpful information in this website, particularly on the disease itself (see “La maladie”) and publications relevant to this tumour (see “Publications”). Please note we are not in a position to direct you to any specific centre for diagnosis or treatment
  • If you are not living in France, given our limited human resources, we are unfortunately unable to reply to requests from foreign patients and doctors. However, find below contact information that could be useful to you. Again, please note, that these contacts are based on our current information and are presented as mere suggestions. They must not be, on any account, considered as recommendations from ASD.
  • If you are living in the United States, we suggest you get in touch with Desmoid Tumor Research Foundation (DTRF), a young and dynamic organisation whose objectives are similar to ours.
  • If you are living in Canada, Dr Robert Turcotte (Centre Universitaire de Santé McGill, MD, FRCSC Oncologie orthopédique / Orthopaedic Oncology, Chef, Département de chirurgie orthopédique / Chief, Department of Orthopaedics) kindly accepted to receive your questions. Please call (514) 934 1934 local 42266 to make an appointment with Dr Turcotte.
  • If you are living in Switzerland, you can get in touch with Dr Raymond Miralbell (Chef de Service, Radio-oncologie, 1211 Genève 14, Hôpitaux Universitaires Genève-CH, Switzerland, Email : Raymond.Miralbell@hcuge.ch)
  • If you are living in Belgium, please contact Prof. dr. P. Schöffski, University Hospital, Gasthuisberg Leuven, Herestraat 49, 3000 Leuven Belgium Patrick.schoffski@uz.kuleuven.ac.be Languages : Dutch, English, German
  • If you are living in Germany, you can contact Association SOS DESMOID (DE), Contact : Luisa Nitsch (nitsch@sarkome.de) and Prof. Dr. med. Peter Hohenberger (Sekretariat), Telefon 0621 3832447 oder 0800-SARKOME (7275663)
  • If you are living in other countries, why not consider launching an association of your own, involving patients, doctors, researchers, ... ? Just imagine the help you can provide to patients and therapists in your country ! We are ready to give you a hand in this creation process, if necessary. One more word : if you don’t find any centre dealing specifically with DT, you can apply to big cancer centres. These centres treat a wide range of tumors, possibly including DT.

And if you happen to know of other groups or associations concerned with Desmoid Tumours, please let us know (contact.international"at"sos-desmoide.asso.fr). We strongly wish to develop close connections with other organisations to share both our experiences and medical information. As we hear of foreign associations, contact information for these organisations will be posted on this webpage.

We are confident that our joint efforts can bring a dramatic improvement in patients’ life and in the understanding of the disease.

Thank you in advance

 

Our organisation (PDF - 148.9 ko)

Our medical information booklet (PDF - 1.2 Mo)