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 look ahead to our plans for the near future.

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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 trained in journalism or graphic arts or medicine.

We may wonder: What makes a brochure or a website text for patients successful? How can our patient advocacy organization ensure the quality of the patient resources we produce?

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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.

However, as important as these activities may be, there is so much more that we advocates can do.

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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.

This section of our website, our blog, is new. This blog aims to strengthen the global sarcoma community by giving the many voices of sarcoma a chance to be heard. We hope our member organisations and their members will gain benefit from it and see it as an opportunity to contribute as well. Voices of Sarcoma is for everyone to read and contribute to.

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The SPAGN Blog

07 Mar Improving Communication between Patients and Oncologists, Part 2: Tips for Getting it Right Improving Communication Between Patients and Oncologists: Tips for Getting It Right, Part 2 In the previous blog post, I suggested that we patients can improve communication with our oncologist by re-thinking our role: We can choose the role of partner……

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2021 SPAEN Virtual Conference: 22 – 24 April 2021

11th SPAEN Annual Conference Virtual, global, informative and collaborative The ongoing pandemic and the decision to hold the SPAEN 2021 Annual Conference as a virtual meeting has allowed us to have even more participants in 2021! Over 200 registered participants attended the SPAEN Conference 2021 with internationally leading sarcoma experts and patient advocates representing organizations…

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