You’ve liked our Facebook page, followed us on Twitter, added us to your circles on Google+, subscribed to the blog and read the website (you haven’t? … well, that’s ok [sort of] — but hey, now is a good time to do so, right?).
But just what is Pseudomyxoma Survivor and who are the faces behind the name?
Pseudomyxoma Survivor is a non-profit organization, run by patients and caregivers. We have volunteers all over the world who help with our support group, our buddy scheme, with raising awareness and, increasingly, with running the organisation – mailing out t-shirts and leaflets, supporting our fundraisers, representing the patient voice at conferences and more.
We have a thriving support community providing emotional support to anyone whose life has been touched by pseudomyxoma peritonei(PMP). As PMP is so rare, having a group with members all around the world gives the community a scale where it is able to offer genuine support and advice around the clock – both emotional and practical. We like to call it our ‘PMP family‘.
We have a board of trustees and an advisory board. The trustees ensure that the organisation is run within a legal framework and meets all the relevant taxation and accounting regulations. The advisory board reviews the information we share on our website to make sure that it is correct.
Our aims are to provide support to patients and caregivers, to raise awareness and to support research. Support to those affected by PMP comes in a number of ways. The biggest way is through our support group, by answering your emails and through the buddy system for those times when a little extra help is needed. Raising awareness isn’t really about making sure the general public know about PMP, although that’s good too; it’s about making sure that the specialists involved in our care know of the issues faced daily by us as patients and also about making sure there is awareness in the wider medical community so that patients get access to the right treatment sooner.
Our patron has a huge interest in rare diseases – he’s this year’s rare Disease Day Ambassador for Eurordis and NORD.
So you see, we do quite a lot of things, really. It’s all done through the support of our donors – through monetary donations and through discounts and donations from vendors. We don’t get any governmental funding nor grants to keep us going so a big thank you to all of you that have donated xxx