Community

Emotional 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. 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.

Buddies

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

Survivor's Stories

Read how pseudomyxoma survivors have fought through stormy times and misdiagnoses, and yet somehow found an inner strength.

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.

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.

HealthUnlocked

HealthUnlocked is the world’s largest social network for health, with 1 million members across the globe, and growing. If you like social but you aren’t a Facebook user, this is the community for you. The community offers peer support with others affected by pseudomyxoma peritonei and appendix cancers. It’s a place where you can share experiences and get answers to questions about your conditions and wellbeing needs.

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