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 sarcoma 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
Susan met with Ilkley MP, John Grogan, to discuss the work of Pseudomyxoma Survivor and Cancer52. Based on current data, 46 percent of cancers diagnosed are rare and less common, yet they account for 54 percent of cancer deaths.
The charity Findacure recently organised a Rare Disease Showcase in Cambridge, and I attended as a representative of Pseudomyxoma Survivor. My only slight problem was that my badge simply said ‘Pseudomyxoma Survivor’ so I had to keep explaining that I actually represented an organisation and wasn’t there as a lone survivor of a rare disease!
Calling all budding artists – our Christmas Card Competition 2017 is launched!
I was 35 and had only just embarked on what should have been the most exciting chapter of my life so far. I was living in Australia with my girlfriend Laura, and whilst working on making the most of the hospitality and weather.
But the care-free life we were just starting to enjoy wasn’t to last, and in a devastating turn of fortunes we were faced with a choice that no one should have to consider; life or death.