The role of patients’ associations

Author:

Hélaine Audrey,Podevin Marieke

Publisher

Elsevier BV

Subject

Cancer Research,Radiology, Nuclear Medicine and imaging,Oncology,Hematology,General Medicine

Reference28 articles.

1. State of knowledge on desmoid tumors elaborated in partnership with expert patients and the doctors involved in the association. 2019: Available from: https://www.sos-desmoide.asso.fr/page/392623-generalites.

2. Bi-annual journal sent to members and partners and made available on SOS DESMOIDE website. 2019 [May 12th 2019]; Available from: https://www.sos-desmoide.asso.fr/articles/31879-le-journal-40-le-journal-des-20-ans.

3. Mignot L. Desmoid Tumor. Available from: https://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=FR&data_id=8665&Disease_Disease_Search_diseaseGroup=desmoide&Disease_Disease_Search_diseaseType=Pat&Maladie(s)/groupes%20de%20maladies=Tumeur-desmoide&title=Tumeur%20desmo%EFde&search=Disease_Search_Simple. Le Dr Laurent Mignot (Adult oncology, Institut Curie) was the first Secretary General of SOS DESMOIDE

4. Convention for the constitution of human biological samples collections that had been signed in January 2004 at the Pitié-Salpétrière hospital in Paris between the Tissue Bank for Research (BTR), the French Association against Muscular Dystrophy (AMF) and the association SOS DESMOIDE

5. CONTICABASE European Sarcoma database and tumor bank. [cited 2019 11 mai 2019]; Available from: https://conticabase.sarcomabcb.org/. This database integrated desmoid tumors thanks to a joint brainstorming of Pr Coindre JM and the SOS DESMOIDE association

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