PSEUDOMYXOMA SURVIVOR
Updated 8 days ago
Appletree House, Ellerton York North Yorkshire YO42 4PA United Kingdom
Pseudomyxoma Survivor is a non-profit organization, run by patients and caregivers. We have a thriving support community providing emotional support to anyone whose life has been touched by pseudomyxoma peritonei (PMP) as well as appendix cancer and other peritoneal surface malignancies. As these diseases are so rare, having a global presence gives the community a scale where it is able to offer genuine support and advice around the clock - both emotional and practical. Patients, caregivers and families have joined together to create an online ‘family'... ‘Taking part‘ is to us a vital part of our patient advocacy programme. We focus on advocating for patients as a group rather than individuals and achieve this through attending relevant congresses and conferences where we can represent the voice of patients and inform medical professionals about patient views and perceived gaps in treatment. We are proud members of Eurordis, the European Rare Diseases organisation, and are the..
Registration numbers: 1143642 (W)