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.

This program’s success depends on patient participation. This is a chance for patients to lead the way on cutting edge research to improve treatment for our disease. To date, FIVE appendix cancer/PMP patients have consented to have their tissue donated to the Broad Institute via pattern.org and FOUR samples have been successfully collected.

The research team at the Broad Institute has told ACPMP that they are very eager to begin growing appendix tumour cell lines, but THEY NEED MORE SAMPLES! The more samples they get, the more successful this project will be, and the better likelihood that the team will be successful in growing cell lines for our cancer that can lead to better diagnosis and treatment.

Models created through this project will have the opportunity to go through drug testing and CRISPR screening, with the goal to match drugs and therapy combinations to our cancer. Find out more about how the development of cell lines for another rare tumour through this program led to the Desmoid Tumor Dependency Map project: https://dtrf.org/desmoiddepmap/

This program is funded by a grant from the United States National Cancer Institute and is FREE to patients, physicians and to ACPMP. Find out how to participate at acpmp.org/tissue-donation

ERNs: Lend your support to the UK’s continued involvement

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?

Donate tissue sample – US patients

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.

An evidence-based approach

The BMJ defines evidence-based medicine as:

“the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients”

It’s a constantly evolving definition and at Pseudomyxoma Survivor, we always look for scientific evidence to back up suggested treatment plans for pseudomyxoma peritonei (PMP) and appendix cancer patients. 

Gearing up for PSOGI 2018

The PERITONEAL SURFACE ONCOLOGY GROUP INTERNATIONAL conference (PSOGI2018), now in its 11th year, is almost upon us. I can't quite believe it's been two years since we attended the one in Washington DC! PSOGI is a non-profit organisation which aims to...
Pseudomyxoma Survivor's Chair, Susan Oliver

Update from our Chair

Following on from the two successful patient days held at Basingstoke Hospital and The Christie, I have been busy attending meetings with Cancer52, Eurordis, National Voices and I secured a bursary place at the Public Health England Conference in Manchester in June....

Supporting the Peritoneal Malignancy Institute in Basingstoke

We got the day off to a great start at the Patients Wellbeing Day in Basingstoke by making a donation to the Peritoneal Malignancy Institute. This donation was made specifically with the help of the Leighton family and friends. Thank you!

Complementary and Alternative Therapies Poll

Join the nearly 2,000 people that voiced their opinions about the use of complementary & alternative therapies in the management of rare diseases by responding to this short #RareBarometer survey. By taking part, you will be contributing to the report for pseudomyxoma peritonei.

Peudomyxoma Survivor patron, Sean Hepburn Ferrer with his mother, Audrey Hepburn

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.

pseudomyxoma survivor dr sugarbaker

10th International Congress on Peritoneal Surface Malignancies

To attend a conference, where there were 600+ people who not only are aware of my disease but have dedicated their lives to researching and performing operations, through HIPEC, all to help in advancing the search for a cure, was a great honour.

Pseudomyxoma Survivor and Team Verrico

Serendipity…

Serendipity! I love that word, it’s my favourite word, so if we are ever on Mr and Mrs together, you know my answer. It means “the occurrence of events by chance in a happy or beneficial way”. A chance meeting, orchestrated by a very special lady in Norfolk, has brought our two charities together.