AMARAPE thrives and grows thanks to the commitment of its volunteers, who are involved in a board of directors in which responsibilities are shared.
Meeting via videoconference, the directors discuss and implement projects.
The annual general meeting is an opportunity for members to meet in a friendly atmosphere in the presence of professionals and to take stock of the actions undertaken.
The AMARAPE team of volunteers
Patricia
“Once I had recovered, creating and then growing AMARAPE allowed me to transform the ordeal of illness into a wonderful human experience, rich in encounters and projects.
Today, I can see how far we have come with the loyal support of our donor members, the invaluable commitment of our volunteers, and the cooperation of professionals.
AMARAPE is a wonderful adventure!”
Didier
"After a long medical odyssey, when I finally received a diagnosis for my peritoneal disease, I was very happy to meet AMARAPE, which helped me along the way. So it was only natural that, once I was back on my feet, I wanted to get involved and give back what I had received. In particular, I wanted to support the association in its relations with professionals, to whom we also owe so much."
Christian
"I am the current (2024) treasurer of AMARAPE. I have not developed any peritoneal-related illness, but as a long-time friend of Patricia, the founding president of AMARAPE, I have supported her commitment and work. I first joined the association, then attended and participated in the general meetings, helping out with the organization. Then I assisted the treasurer in his work (issuing tax receipts to donors) and finally replaced him at short notice when he was unable to continue his work in 2020. At each General Meeting, I see the great interest that medical staff (doctors, researchers, nurses, etc.) show in the association, and I witness the warmth of the exchanges between members."
Véronique
"I underwent surgery for peritoneal pseudomyxoma in 2007 and 2013. I am now cured thanks to the dedication of the medical teams, to whom I am very grateful. Thanks to AMARAPE, I have trained in listening and patient/professional partnership. Since then, I have devoted myself to supporting patients and their loved ones, and I am always touched by the great courage they all show. I lead discussion groups between patients and I am a patient partner at the Hospices Civils de Lyon Sud, where I visit hospitalized patients. I also support volunteers who want to become caregivers themselves. All of this feeds my love of sharing and meeting wonderful people. I am also a member of the AMARAPE Scientific Council. I am happy to be part of such a dynamic and friendly association, which I invite you to join!
Christian
"Patient diagnosed with primary malignant peritoneal mesothelioma discovered incidentally. Operated on in 2022 with cytoreduction + HIPEC, adjuvant chemotherapy, then TALAMESO clinical trial. AMARAPE has been a tremendous help. Thanks to their support and valuable advice, I have become an active participant in my own treatment. I joined the AMARAPE board of directors in 2023, and I am now committed to paying tribute to caregivers, raising awareness of rare peritoneal diseases, sharing my life story with new patients, and supporting research."
Jean-Marie
"I have been in charge of communications at AMARAPE since 2020. After being diagnosed with peritoneal pseudomyxoma and spending several months going from doctor to doctor, I learned about specialist centers thanks to the AMARAPE website. After cytoreductive surgery and HIPEC, I was quickly able to resume normal activities. I am happy to participate in AMARAPE's activities, which improve patients' lives through its mission of listening and helping research into rare diseases of the peritoneum."
Adeline
"My name is Adeline, and I am a member of the board of directors and a volunteer listener for the association. Following an adnexectomy performed in 2019 during my second pregnancy, I was diagnosed with peritoneal pseudomyxoma. I was then taken into care by a team of professionals at a specialist center in May 2019. The following year, I met Véronique, who listened to me attentively. I participate in the support group and have also been trained in active listening. Today, I contribute to the life of the association by making myself available to listen to patients or their loved ones who need to talk about our rare peritoneal diseases. The bond that unites the members of our association and the professionals who care for us is, for me, unique and essential."
Julie
"In February 2022, I underwent surgery for low-grade appendicular peritoneal pseudomyxoma at a specialist center where I received the best care. Offering my help to AMARAPE was an important step for me and an opportunity to give meaning to this rare disease. I met the whole team in October 2022 and joined the board of directors in March 2023. I am involved in a variety of tasks: administration, communication, participation in events, etc. Through the association, I help raise awareness of rare peritoneal diseases, support research, express my gratitude to medical staff, and hope to give hope to other patients."
Isabelle
"When I was diagnosed with the disease in 2014, AMARAPE was a great source of support with its information. And it was after my second operation in 2018 that I wanted to get involved in the association to help patients, their loved ones, researchers, and healthcare teams, whose commitment is essential in this type of disease. As a member of the board of directors, I manage the association's Twitter account and assist Véronique in facilitating discussion groups."
Sylvie
“My name is Sylvie. I trained as an accountant and am responsible for rental management in shopping centers. I have also been president of the SGS artistic roller club for almost 20 years. Over the years, I have discovered the world of associations and the difficulties they face. In January 2024, I sadly lost my husband to colon and peritoneal cancer. I would have liked to have met AMARAPE before his death, but that’s how it is. This is also what motivates me today to help AMARAPE raise awareness and share my journey with other caregivers. I am delighted to put my skills at the service of the association and thus take on the role of treasurer.”
Naima
Belgium, Tourism and Leisure Educator
My involvement with the board of directors of the AMARAPE association is the result of a personal journey, shaped by the ordeal I went through as a patient with peritoneal pseudomyxoma cancer. This disease, although difficult, allowed me to rediscover meaning in my life and get to know myself better, while opening me up to new passions and skills, particularly in the field of audio content creation.
Thanks to AMARAPE, I have found valuable resources and connections, as well as a wonderful community that transcends the pain of illness. My involvement in the association is a way of giving hope back to the entire community that is going through similar trials. I am particularly involved in fundraising, recruiting volunteers, and serving as an external liaison to strengthen our collective mission.
By joining AMARAPE, I hope to help improve patients’ lives by sharing my journey, mobilizing resources, and supporting those who, like me, are seeking to overcome the challenges posed by these rare diseases. My involvement on the board of directors is much more than a personal investment; it is a commitment to a cause that is close to my heart, that of bringing light and support to those who need it.”