Association contre les Maladies Rares du Péritoine

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AMARAPE is an association created by patients with two rare diseases of the peritoneum : pseudomyxoma and mesothelioma.

 

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“RENAPE” NETWORK DEFINITION

 

RENAPE is the National Network of Primary Peritoneal Malignant Tumours. It is a pilot coordination network for the medical management of these rare cancers, created in 2006 following the initiatives of Professors François-Noël Gilly and Olivier Glehen.

This network structure has already put in place several actions during the last 3 years.

The first one was to develop a registry of clinical data and retrospective anatomo-pathological reports of French patients suffering from peritoneal mesothelioma, pseudomyxoma peritonei and primitive peritoneal serous carcinoma. An analysis of these data has been presented in a report and at the Congress of the French Surgery Association in October 2008.

A Pluridisciplinary Concertation Meeting devoted to the malignant pathologies of the peritoneum has been created in March 2008 in the region Rhône Alpes Auvergne. This meeting, which is held every 2 to 3 months, presents 8 to 10 medical files per session. It gathers the University Hospital Centres of Edouard Herriot, Lyon Sud, Croix Rousse, St Etienne, Grenoble and the Centre de Lutte contre le Cancer (CCLC) Léon Bérard. The objective is to maintain these meetings and to develop them in other regions.

In order to increase knowledge and therapeutic education on these rare pathologies, recommendations on quality criteria in cancer surgery of colorectal cancer and pseudomyxoma peritonei  have been written in 2007 (SFCD) and 2008 (INCA). The 6th International Workshop for Peritoneal Surface Malignancy was held in Lyon on 17-18 November 2008 and has gathered 400-500 participants. A national day for the treatment of peritoneal carcinomatosis by surgery and intraperitoneal chemotherapy is now being held every May in Paris.

RENAPE wishes today to strengthen and structure the links and collaborations between the « French National Network » and the European teams: the very low incidence of primary malignant pathologies of the peritoneum will make it necessary in the near future to put in common the experiences at a European level.

RENAPE also wishes to put in place rules of good clinical practice, resulting from the important experience accumulated by the founding teams and the associated teams. This will allow that patients who were managed initially by non specialized health care structures can keep their best chances for secondary therapeutic care provision.

Olivier Glehen (Chirurgical Professor)

Service de Chirurgie Générale, Thoracique et Endocrinienne, Centre Hospitalier Lyon Sud, 69495 Pierre Bénite Cédex