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

New guidelines issued for GPs

Hopefully, going to the GP with some of the symptoms for PMP could result in earlier tests and lead to an earlier diagnosis for patients.

Jenny’s Story

A Bristol woman has made a full recovery after having nine of her organs removed. Jenny Ramage was told she would have died if she hadn’t undergone what doctors call the ‘mother of all surgeries’.

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 on solely 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 volunteer availability, it might take us a little longer than usual to get back to you. Please be patient with us.