International recognition for AMARAPE at the World Congress on Rare Peritoneal Diseases (PSOGI)
Mission accomplished for our association at the international scientific meeting dedicated to our diseases
Our association recently took a new step forward in its commitment to patients with rare peritoneal diseases. At the international congress dedicated to these diseases, held in Barcelona from October 29 to 31, our association received particularly significant recognition. This event, which brought together more than 700 researchers, clinicians, and patient representatives from around the world, highlighted the essential role that AMARAPE plays in providing information and support to patients and caregivers, fostering caregiver/patient relationships, and supporting research.
For the first time, members of our association were invited alongside other members of international patient associations to share their experiences of care and resilience (thank you to Christian Magar and Jeanne Nascas for their testimonials).
A manifesto to institutionalize our actions
AMARAPE’s presence was marked by its participation in the drafting and submission of a manifesto summarizing the actions and commitments made by seven international associations (US, UK, Spain, Netherlands, and France).
This document is an invitation to:
- Listen, learn, and work together
- Raise awareness, expand access, and promote compassion
- Ensuring that no one facing a malignant peritoneal tumor feels invisible or alone
- Guaranteeing that every patient, everywhere in the world, will have the right to prompt care, specialized treatment, and dignity
Thank you to Didier Sandoz, Jeanne Nascas, Bernard Delomenie, and Christian Magar for their active participation (Manifesto available for download below).
Encouragement for the future of our association
This international recognition reinforces the legitimacy of our actions and confirms the importance of the link between healthcare professionals and patient associations in the field of rare diseases.
Participation in this congress and the positive feedback it generated open up new prospects for collaboration with specialized teams and structures worldwide. It also encourages us to continue our missions: supporting patients, uniting the community, and actively contributing to advancing knowledge and care for rare diseases of the peritoneum.