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
Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases and the theme for this year is research. Research is key as it brings hope to the millions of people living with pseudomyxoma peritonei (PMP) and other rare diseases across the world and to their families.
It’s been a very long year for the team at Pseudomyxoma Survivor Towers. We’ve seen lots of new members join the support groups and we’ve lost some very special members too. The same applies to our team, we’ve extended the board of trustees (watch out for our newsletter to introduce you to Salena, our newest trustee), experienced the sad loss of our founder and gained some valued volunteers as well. We’ve had ill health to battle and personal issues to deal with along with the usual anxiety experienced with blood tests and scans.
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Specialists and surgeons
Our directory is updated with information provided by the specialists themselves and is constantly reviewed.