Association against rare peritoneal diseases

Created in 2007 by patients suffering from rare, peritoneal tumors, the National Association against rare peritoneal diseases – AMARAPE – brings together everyone who wants to fight these rare diseases, little known to patients, their relatives, doctors and nurses.

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who are we ?
Rare diseases of the peritoneum
Treatments

AMARAPE has four objectives:

  • To inform the public, the medical community, the health and social authorities, in order to improve diagnosis, support and monitoring of those people suffering from rare, peritoneal diseases,
  • To facilitate equal access to care for patients across the country, in collaboration with the national reference center for the management of rare peritoneal tumors,
  • To help patients and their relatives affected by peritoneal diseases,
  • To contribute to the medical research effort and to improve the practice of care for peritoneal tumors.
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The AMARAPE actions

Help to patients and their relatives

AMARAPE wants to fight diagnostic wandering that too often characterizes the journeys of patients with rare diseases. By sharing information and facilitating exchanges, AMARAPE aims to support patients and their relatives throughout their care journey. It is crucial that each patient has access to the appropriate treatment in specialized centers.

Because the announcement of the diagnosis is always a shock, AMARAPE offers patients and their relatives, advice and testimonials available on its website. For those who wish, AMARAPE offers attentive and compassionate listening at all stages of the care journey.

A Collaboration Between AMARAPE and RENAPE

To achieve their goals, AMARAPE and RENAPE work together, in order to raise awareness and increase recognition of rare peritoneal diseases. This collaboration strengthens everyone’s actions by bringing both points of view, the one of patients and their relatives and the other one of experienced and expert medical teams.

Informing you

Liver, spleen, stomach, small intestine… All these abdominal organs are surrounded by a thin membrane: the peritoneum. The peritoneum lines the abdominal cavity and the outside of the viscera contained within this cavity. This smooth, serous membrane, which contains a thin layer of fluid, is made up of two layers:
the visceral layer, known as the visceral peritoneum, which lines the digestive organs
the parietal layer, known as the parietal peritoneum, which is against the abdominal wall and pelvis
Between the two, there is a space: this is called the peritoneal cavity.
Find presentations on peritoneal cancer with Allo Docteurs:
https://www.allodocteurs.fr/maladies-cancer-cancer-du-peritoine-quels-traitements-existe-t-il-25402.html

The RENAPE network has set up a network of specialized teams throughout France to establish specific, high-quality care pathways, guarantee equal access to care and expertise for all, and provide access to innovative treatments for patients who need them.

https://www.renape-online.fr/trouvez-votre-centre/

AMARAPE offers resources:

Supraregional multidisciplinary consultation meetings on rare cancers (RCPCR) dedicated to primary and metastatic diseases of the peritoneum are organized within the RENAPE network. These multidisciplinary discussions bring together surgeons, medical oncologists, pathologists, and radiologists, all of whom specialize in the treatment of these cancers.
Any referring physician can request a “RENAPE” RCPCR when, in their opinion, a medical decision for a patient requires a multidisciplinary analysis of the situation. In this context, the following may be discussed:

  • validation of a treatment proposal;
  • validation of a significant change in treatment;
  • request for an opinion or diagnostic confirmation.


For more information:

https://www.renape-online.fr/rcp/

HIPEC, which stands for Hyperthermic Intraperitoneal Chemotherapy, is offered as a treatment for peritoneal carcinomatosis. The concept is as follows: the visible disease (macroscopic disease) is treated by cytoreductive surgery, then the disease that is invisible to the naked eye (microscopic disease) is destroyed by heated chemotherapy administered directly into the peritoneal cavity.

https://www.chu-lyon.fr/chimiotherapie-hyperthermique-intra-peritoneale-chip

Prehabilitation takes place in the weeks leading up to major surgery and involves frail patients; it is based on four main pillars: physical, nutritional, psychological, and medical preparation.

https://www.chu-lyon.fr/prehabilitation-avant-chirurgie-majeure

RAC, or enhanced recovery after surgery, is an approach to surgery that allows you to quickly regain your independence.
https://www.chu-lyon.fr/rehabilitation-amelioree-apres-chirurgie

Family and loved ones play an important role alongside the patient, in terms of both companionship and support.
Living with someone who has cancer: https://www.e-cancer.fr/Patients-et-proches/Aider-un-proche-malade/Role-des-proches
Supporting the end of life: a resource site https://www.sosfindevie.org/

What to say to someone at the end of life: a resource video: https://www.youtube.com/watch?v=CW1Ichc806c

If you need information, help, or support, you can contact healthcare professionals.

Find out the definition given by the French National Authority for Health and the results of the AMARAPE survey on caregivers in 2029: https://www.amarape.com/aider-un-proche-malade/

Access resources on the caregivers’ association website: https://www.aidants.fr/

Thanks to the generosity of its donors, AMARAPE has been actively supporting medical research since 2014 with issuing calls for projects and awarding one or more research grants.

To learn more about how donations are used click on :

Use of donations

Partners :