Emotional support and practical advice that’s proven to make a real difference
We are family
We’ve found our community has become like one, big extended family. No-one quite understands what you are going through quite as much as someone else who has been there or is going through it themselves. We have different ways of reaching out, of sharing what we have been through. Hopefully you will find a way that’s right for you whether that is a support group, sharing stories or maybe having some one to one support.
Our group is a private, secure place to share diagnoses, treatment options, support and the highs, lows and bits in between.
Connect with others around the world to share support and encouragement, with translations between five languages.
Read how pseudomyxoma survivors have fought through stormy times and misdiagnoses, and yet somehow found an inner strength.
This is for you if you’ve been in some way affected by PMP, appendix cancer or another peritoneal surface disease. Our group is a private, secure place to share diagnoses, treatment options, support and the highs, lows and bits in between. Only fellow members can see you’re in the group and read your posts. And best of all, we all understand what you’re going through.
If you’re a PMP patient or caregiver and would like some mutual support, please complete the application form. The administrators will contact you within 48 hours.
As recognised patient advocates, we host the pseudomyxoma peritonei community on RareConnect, a forum where we can communicate with others in different languages, with human translation. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
In the News
Following her operation, Mel had four months off work as she recovered and says that making loom bands helped take her mind off the trauma of what she had been through. Read her story in the Ipswich Star.
Congratulations to Kettering Science Academy student, Ezri, for completing 6.8km and raising money for two worthy causes at the same time.