Findacure Rare Disease Showcase, Cambridge

The charity Findacure recently organised a Rare Disease Showcase in Cambridge, and I attended as a representative of Pseudomyxoma Survivor.  My only slight problem was that my badge simply said ‘Pseudomyxoma Survivor’ so I had to keep explaining that I actually represented an organisation and wasn’t there as a lone survivor of a rare disease!

Cancer 52 Members Meeting, July 2017

Cancer52 is an alliance of 90 organisations, within the UK, working to address inequality and improve outcomes for patients with highly challenging disease, such as pseudomyxoma peritonei (PMP). 52 percent of UK cancer deaths have been determined to be from the less common cancers (although recent statistics show a likely increase to 54%).

Eurordis Membership Meeting 2017

With increasingly limited Government resources (and the impact within the UK of Brexit), we must all be aware that healthcare may not continue to be a national priority in each of our own countries, this is really worrying for rarer diseases like ours as we could be pushed further and further down the priority list.

Complementary and Alternative Therapies Poll

Join the nearly 2,000 people that voiced their opinions about the use of complementary & alternative therapies in the management of rare diseases by responding to this short #RareBarometer survey. By taking part, you will be contributing to the report for pseudomyxoma peritonei.

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