One of the recommendations of the Charity Commission, whoregister and regulate charities in England and Wales, is that charities work with other charities. This is extremely important to the trustees of Pseudomyxoma Survivor and key to a lot of the things we do. We work with Team Verrico to support families affected by pseudomyxoma peritonei emotionally through access to their councilling service. We work with Cancer 52 to promote improved diagnosis, treatment and support for those affected by rare and less common cancers. We are part of several rare disease networks, including Eurordis, Rare Voices Australia and CORD, to ensure that the voice of PMP patients is represented and that adults with rare diseases are not overlooked as most rare disease patients are children. This is to name but some of the organisations we collaborate with.
As a trustee, Susan feels passionately about this and takes the lead.
Susan
Trustee and Chair
For the first ten years of my diagnosis, I did not speak to or meet anyone with the same cancer as me. Actually, this is maybe just as well as it took me that long to work out how to pronounce it! I’m a working trustee for Pseudomyxoma Survivor and it’s important to me that we work with other organisations and that those of us affected by pseudomyxoma peritonei (PMP) have a voice. As well as being the Chair of Pseudomyxoma Survivor, I represent the charity in our engagement with a number of other organisations in the rare cancer and rare disease community. I now get to speak to people about PMP and how to improve diagnosis for those recently starting their journey all the time and that is a great privilege.
– Susan