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, 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
As patients, we want to be as best informed as possible so we can advocate for ourselves. A great graphic from Rasmussen College. by Rasmussen_College. From...
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...
All Countries, Patient Advocacy, Research
Requests for patient perspectives in health, research and social policy-making are on the rise as the benefits associated with evidence-based programmes or policies are being increasingly recognised and required by all stakeholders. To best respond to a growing...
