Community
Emotional support and practical advice that’s proven to make a real differenceWe are family
We’ve found our supportive community has become like one, big extended family. When you have been diagnosed with pseudomyxoma peritonei (PMP) or appendix cancer, it’s tough. 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.
Facebook group
Our group is a private, secure place to share diagnoses, treatment options, support and the highs, lows and bits in between.
RareConnect
Connect with others around the world to share support and encouragement, with translations between five languages.
Facebook Page
Anyone can view, like and share Pseudomyxoma Survivor’s page and it’ll keep you up to date with our latest events and photos.
Survivor's Stories
Read how pseudomyxoma survivors have fought through stormy times and misdiagnoses, and yet somehow found an inner strength.
If you’re more of a tweeter, you can also follow us @PMPSurvivor
Facebook Group
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.
RareConnect
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
Cancer-associated thrombosis (CAT) survey
Can you help build a better understanding of patient awareness about thrombosis? New patient survey launched across Europe (including the UK).
People with cancer have a higher than normal risk of developing a blood clot – a condition known as cancer-associated thrombosis (CAT). Yet it remains under-reported, seldom discussed and often misdiagnosed.
read more
MP backs group work on cancer
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.
read more
Lisa takes part in a photoshoot
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.
read moreHelping us help you
Shop with us
Show your support for the pseudomyxoma peritonei and appendix cancer community. Have a look at our Pseudomyxoma Survivor t-shirts, running shirts and more in our shop. What will you buy?
We need your support
We’re a small charity supporting those affected by a very rare cancer, pseudomyxoma peritonei or PMP. Pseudomyxoma Survivor relies solely on donations to carry out the work that we do.
Specialists and surgeons
Our directory is updated with information provided by the pseudomyxoma peritonei and appendix cancer specialists themselves and is constantly reviewed.