About Pseudomyxoma Survivor
Pseudomyxoma Survivor is a non-profit organization, run by patients and caregivers. We have a thriving support community providing emotional support to anyone whose life has been touched by pseudomyxoma peritonei (PMP) as well as appendix cancer and other peritoneal surface malignancies. As these diseases are so rare, having a global presence gives the community a scale where it is able to offer genuine support and advice around the clock – both emotional and practical. Patients, caregivers and families have joined together to create an online ‘family’.
- offer practical and emotional advice on managing symptoms and all aspects of living with this rare disease
- manage a one-to-one buddy system
- fund small grants to help patients and caregivers with the impact of treatment
- support research
As a non-profit organisation, we’re completely dependent on voluntary donations. We’re too small to have offices or staff; the charity is run entirely by volunteers. Our patron is Sean Hepburn Ferrer. Sean’s mother, Audrey Hepburn, passed away shortly after being diagnosed with PMP. Sean also has a special interest in rare diseases more generally and has been Rare Disease Day Ambassador for Eurordis and NORD, the European and North American rare disease organisations.
Who are we?
Trustee, Chair of the board of Trustees
Trustee, Secretary to the board of Trustees
Angela was diagnosed with Stage IV ovarian cancer in March 2010. Following a total hysterectomy, this diagnosis was changed to PMP. With a background in IT management and an interest in website design, Angela began helping Dawn with the Pseudomyxoma Survivor website. She’s now an integral part of the charity’s day-to-day, co-ordinating the buddy scheme and managing the IT systems. Angela is also a Macmillan Cancer Voice.
Cassandra was told she had ovarian cancer in December 2017. After several tests, her diagnosis was changed to Pseudomyxoma Peritonei or PMP. Whilst waiting to meet the specialists at Basingstoke and North Hampshire Hospital, she found the Pseudomyxoma Survivor charity who gave her support and information about what was to come. Cassandra had surgery in May 2018 and a year later started to volunteer for the charity to give back to others some of what she received herself. She lives in the Midlands with her husband and two dogs. Cassandra is a Community Champion for Macmillan’s online community.
Georgina was diagnosed with Appendix Cancer in September 2018, after initially being diagnosed with ovarian cancer. She has had surgery at Basingstoke and currently having systemic chemotherapy closer to home in Newcastle. Georgina has been a General Practioner since 2014 and is keen to raise awareness amongst the public and medical profession of this rare disease and ensure patients get specialist referral to the UK centres of excellence for PMP. Georgina has a background in senior clinical leadership and hopes to bring these skills and her passion for making a difference to Pseudomyxoma Survivor as a Trustee.
Sean Hepburn Ferrer
As the elder son of Audrey Hepburn, Sean Hepburn Ferrer has been aware of pseudomyxoma peritonei for many years. Audrey Hepburn, arguably one of history’s most iconic actresses, style icons and Humanitarian Ambassadors, lost her fight to pseudomyxoma peritonei originating from an appendiceal adenocarcinoma in 1993 after a short illness. Treatment has progressed a great deal in that time with the advancement of cytoreductive surgery and HIPEC.
With a special interest in rare diseases, Sean is also continuing as Eurordis’ Rare Disease Day ambassador for 2015 following his nomination for the post by Pseudomyxoma Survivor‘s founder, Dawn Green.
‘Taking part‘ is to us a vital part of our patient advocacy programme. We focus on advocating for patients as a group rather than individuals and achieve this through attending relevant congresses and conferences where we can represent the voice of patients and inform medical professionals about patient views and perceived gaps in treatment. We are proud members of Eurordis, the European Rare Diseases organisation, and are the founding host organisation of the pseudomyxoma peritonei support community on RareConnect, a project by NORD and Eurordis. Additionally, we are members of Cancer 52 and Angela and Susan are Macmillan Cancer Voices.
The real emphasis of our community is you. As patients, caregivers and supporters, you are the reason why our organisation exists. It’s your continued support and consideration that allows us to grow and to support those affected by pseudomyxoma peritonei worldwide.
Each day we see firsthand how patient advocacy and peer support helps in a real way. We see people supported both in a group environment, through our Facebook and RareConnect groups, and getting 1:1 support through our buddy scheme. Patients and caregivers ourselves, we appreciate that such support is there for us when we need it ourselves. The number of people we have in collaboration offering help, support and advice is the real evidence of our success.
The information on our website is written by patients and reviewed by our medical advisory board of PMP and appendix cancer experts. The board has been established to support Pseudomyxoma Survivor in all its work but with particular emphasis on supporting the development of information resources for patients, families and carers.
Mr Omer Aziz
Consultant Colorectal, General & Laparoscopic Surgeon
Professor Norman Carr
Director of Research and Consultant Histopathologist
Professor Wim Ceelan
Senior Surgeon and Associate Professor
Laura Lambert, MD
Surgical Oncologist and General Surgeon
Mr Faheez Mohamed
Professor Paul Moroz
Surgical Oncologist and General Surgeon
Armando Sardi, MD FACS
Surgical Oncologist and Medical Director
Our objectives are focused on support and information, awareness and research.
Find out how we produce our information, about our quality control and how you can help.
If you are looking to share with others or to find a specialist, we have the right places for you.