Community

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.

Facebook group

Our group is a private, secure place to share diagnoses, treatment options, support and the highs, lows and bits in between.

Events

Keep up to date with our Calendar of Events, including conferences, fundraising and awareness days. Please email us if you are organising or know of any PMP events and would like them listed here.

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. 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.

Twitter

If you’re more of a tweeter, follow us @PMPSurvivor

Buddies

We set up our Buddy system to supplement the support already given by your family, friends and doctors.

Guestbook

If you want to leave messages to other survivors or visitors to the website, drop by and leave a message on our guestbook. We look forward to reading them!

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.

Join Facebook group

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

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.

Rare Disease Day 2017, Research, Audrey Hepburn, Sean and us

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.

Merry Christmas!

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.

Shop with us

Have a look at our t-shirts, technical shirts and more in our shop. What will you buy?

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We need your support

Pseudomyxoma Survivor relies solely on donations to carry out the work that we do.

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Specialists and surgeons

Our directory is updated with information provided by the specialists themselves and is constantly reviewed.

find a specialist

Due to availability, it may take us longer to get back to you than we would like. Please be patient with us. Thank you!