Pseudomyxoma SurvivorThe support network for those affected by pseudomyxoma peritonei, appendix cancer and peritoneal surface malignancies
We’re a patient and caregiver run organisation offering advice on managing symptoms and all aspects of living with this rare disease; we advocate for patients and more. As well as all this, we’re people you can share experiences with and share the laughter and the tears.
Together we’re stronger and can face anything.
Stories from across the world
Here at Pseudomyxoma Survivor, our focus is very much on surviving with pseudomyxoma peritonei (PMP) and appendix cancers. One group of our community who are surviving with PMP and appendix cancer are those that are surviving after the loss of a loved one to the...
The voice of rare disease patients in Europe, EURORDIS, is supporting the Genetic Alliance UK’s #ProtectERNs campaign that calls on the UK government and the EU to secure the sustained involvement of the UK in European Reference Networks (ERNs) post Brexit. How can you help?
Calling US patients: Do you have an upcoming surgery or an ascites drain scheduled in the United States?
If so, please consider donating your excess tissue for an important research project. The ACPMP Research Foundation has partnered with Pattern.org to enable patients to donate their excess tissue or fluid to the Cancer Cell Line Project at the Broad Institute of MIT and Harvard.
From patients and from caregivers
Being relatively new to the group, I just wanted to say how cool I think it is that we are from all over the world and yet we share and are brought together by something so life changing. It is something that bonds us together in a way that shared nationality or age or gender alone never could. I just wanted to let all of you know how much I value knowing you are out there and supporting each other.
Life and its uncertainties are hard enough as a cancer patient but when your income is so low that you don’t have the money to travel to see a cancer specialist, the door of hope and a future for your life is closed to you. That’s what I was facing, but Pseudomyxoma Survivor gave me a financial grant which opened that door for me so I could travel to see my cancer specialist to get the treatment I desperately needed to save my life. They are lifesavers.
I found this website extremely useful with answering questions when I was first diagnosed with pseudomyxoma peritonei. I am almost a year post diagnosis and I could not of managed without the support, the answers, the love and hugs sent when you’re down. It’s an amazing site and the support group is full of lovely people.
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Specialists and surgeons
Our directory is updated with information provided by pseudomyxoma peritonei and appendix cancer specialists themselves and is constantly reviewed.