In the News, Raising Awareness, UK
Pseudomyxoma Survivor’s Susan met with Ilkley MP, John Grogan, to discuss the work of Pseudomyxoma Survivor and Cancer52, an alliance of 95 predominantly small cancer charities united by their vision of seeking a better future for everyone affected by rare and...
All Countries, Patient Advocacy, Raising Awareness, Survivor's post
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...
All Countries, Fundraising, Raising Awareness, Supporting Pseudomyxoma Survivor
Announcing our Christmas Card Competition for 2017 We have two categories: Junior (16 and under) and Adult. The closing date is October 1st. The cards will be for sale in the shop here on our website shortly afterwards. If you would like to enter, please send us your...
All Countries, Raising Awareness, Survivor's Story, Survivor's Story (UK), UK
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...
All Countries, Patient Advocacy, Raising Awareness, UK
On behalf of Pseudomyxoma Survivor and our commitment to provide advice and promote advocacy, Kirsten and I both attended the latest Cancer 52 members meeting in London in July 2017. Cancer52 is an alliance of 90 organisations, within the UK, working to address...
All Countries, Patient Advocacy, Raising Awareness
So once more I have been representing Pseudomyxoma Survivor and this time I found myself at the Eurordis Membership Meeting in Budapest. Representing 30 million people affected by rare diseases throughout Europe, Eurordis is a non-governmental patient-driven alliance...
