MP backs group work on cancer

Susan met with Ilkley MP, John Grogan, to discuss the work of Pseudomyxoma Survivor and Cancer52. Based on current data, 46 percent of cancers diagnosed are rare and less common, yet they account for 54 percent of cancer deaths.

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!

When you’re faced with life and death, you choose life

I was 35 and had only just embarked on what should have been the most exciting chapter of my life so far. I was living in Australia with my girlfriend Laura, and whilst working on making the most of the hospitality and weather.

But the care-free life we were just starting to enjoy wasn’t to last, and in a devastating turn of fortunes we were faced with a choice that no one should have to consider; life or death.

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.

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