What we do
Support and information • Awareness • Research
Pseudomyxoma Survivor provide support & information for the PMP community
- We offer online support to patients and carers through our online communities
- We have an active Facebook and Twitter pages where we can communicate with each other in a social online environment. We are also on Google+, Tumblr and Pinterest promoting awareness and community
- We develop authoritative information with input from patients, carers and healthcare professionals.
We bring about change to raise awareness of pseudomyxoma peritonei and improve standards of treatment and care
- We bring together people who are affected personally by the disease and who want to help shape and improve pseudomyxoma peritonei services and to raise awareness be that locally, nationally or internationally
- We are represented on national, local and European initiatives working to improve standards of treatment and care
- We are active in the areas where we can affect policy representing the experiences of PMP patients and lobbying for more awareness and improved standards of care
In December, Susan and Angela have been asked to present at the EuroPMP International Workshop on pseudomyxoma peritonei. It is a privilege to be asked to present to this network of experts from many fields, including surgeons, pathologists, oncologists, radiologists, molecular biologists, bioinformaticians and allied health care professionals of which Angela is a participant.
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.
We were invited by our patron, Sean Hepburn Ferrer, to the VIP opening reception of the Intimate Audrey exhibition. Intimate Audrey is an exhibition on the life of Audrey Hepburn created by her son, Sean, to celebrate her 90th birthday anniversary in her birth town of...