The SPAGN Blog
What are your priorities in bone sarcoma research?
Research Priorities in Bone Sarcomas Bone sarcomas are a diverse and hard to treat group of rare cancers. People with bone sarcomas (or primary bone cancer) have high unmet medical needs, and face a range of challenges including delays to diagnosis,...
The Value of Patient Involvement in Research
We hear a lot about patient involvement in research these days. It's a hot topic. But what does it actually mean? And more importantly, what benefits does it bring? I have been working as an involved patient in cancer research...
Looking back on 2022 and ahead to 2023
How was 2022 for your organization? What accomplishments are you proud of? We at SPAGN are looking back at what we have done in the past year to impact the treatment and survival of sarcoma patients. We also want to...
How to Create High-quality Information Materials for Patients, Part 1: Checklist of Key Steps
As any advocate knows, an important task of a patient organization is to produce information materials for patients and their caregivers. This task is not as easy as it looks -- after all, most of us advocates have not been...
Advocacy 2.0: The Evolving Role of Advocates in Rare Cancers
What do you say when someone asks you what a patient advocate does? If you asked me, I would answer from my own experience: Advocates work with patients and their families. We support people and we share information with them....
Introducing Voices of Sarcoma: Let Your Voice Be Heard
Thirteen years ago, a handful of people touched by sarcoma were united by a common aim: to bring together sarcoma patient groups and enable them to express a collective voice in the healthcare world. Sarcoma Patients Euronet (SPAEN) was born....
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Would you like to submit a text to Voices of Sarcoma?
The blog Voices of Sarcoma covers topics of interest to the wider SPAGN community, which includes patient advocates of our Member Groups, sarcoma patients and caregivers, as well as members of the medical profession. The aim of the blog is to convey information, share experiences and viewpoints, and strengthen the bonds of the international sarcoma community. While Voices of Sarcoma welcomes submissions on a wide range of topics, we ask that you adhere to our Editorial Guidelines. Find out more.
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