CommunityEmotional support and practical advice that’s proven to make a real difference
We are family
We’ve found our supportive 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 someone 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
Susan met with Ilkley MP, John Grogan, to discuss the work of Pseudomyxoma Survivor and Cancer52. Based on current data, 46 percent of cancers diagnosed are rare and less common, yet they account for 54 percent of cancer deaths.
Following the Loose Women Body Stories campaign, Lisa took part in a photo shoot organised by The Sun newspaper. We caught up with her and talked to her about the shoot.
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.
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Specialists and surgeons
Our directory is updated with information provided by the specialists themselves and is constantly reviewed.