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Pseudomyxoma Survivor

Angela Brook
03003020050
[email protected]

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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 is 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’.

Together we:

  • 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 is Rare Disease Day Ambassador for Eurordis and NORD.

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 is Rare Disease Day Ambassador for Eurordis and NORD, the European and North American rare disease organisations.


 

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Registered Charity Number in England and Wales 1143642

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