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Rare Disease UK

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Rare Disease UK is the national campaign for people with rare diseases and all who support them. Rare Disease UK provides a united voice for the rare disease community by capturing the experiences of patients and families....

My overnight hospital stay eventually turned out to be 17 nights!

all countries, Pseudomyxoma Peritonei, Survivor's Story (UK), The Christie, UK

My story begins in 2021 when I started to try and lose some weight and over the first part of the year I managed to lose a stone. However, although I’d lost some weight my belly didn’t seem to have got and smaller, if anything, it had got bigger! I didn’t think much...

What are the statistics for pseudomyxoma peritonei?

all countries, Frequently Asked Questions, Pseudomyxoma Peritonei, research

It’s estimated that 1 in 2 people in the UK born after 1960 will be diagnosed with some form of cancer during their lifetime and that every two minutes someone in the UK is diagnosed with cancer. What numbers are there for pseudomyxoma peritonei (PMP)? The...

What’s MOAS?

Frequently Asked Questions

MOAS is an abbreviation for the term the “Mother of All Surgeries” and refers to CRS and HIPEC.  The phrase was coined by the wife of a patient on her blog about their experiences with pseudomyxoma peritonei. The expression stuck and has become standard language in...

CORD

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CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments,...

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Recent Comments

• Vinnie on If the mountain seems too big today
• Sarah T on I’m now on ‘watch and wait’ following a diagnosis of pseudomyxoma peritonei
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