Global TGCT consensus paper published

  The SPAGN expert-patient global consensus paper on the management of TGCT (Tenosynovial Giant Cell Tumor) has been published in “Cancer Treatment Reviews”. Over 50 experts and patient advocates have worked together over months to formalize guidelines based on the available evidence and experience within the expert community. We are happy and proud to bring…

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SPAGN Annual Conference & New Horizons GIST 2023:
Hand in Hand for the first time

Save the Date! 2023 SPAGN Annual Conference May 11-13, 2023 in Dublin/Ireland NEW HORIZONS GIST May 13-15, 2023 in Dublin/Ireland For the first time ever, the SPAGN Annual Conference and the New Horizons GIST Meeting will be held hand in hand.   About the SPAGN Annual Conference: Since 2010, SPAEN/SPAGN has organized annual conferences to…

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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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SPAGN Annual Conference 2023 – Save-the-Date

Since 2010, SPAEN/SPAGN has organized annual conferences to bring sarcoma, GIST and desmoid patient groups, experts, researchers and industry together. These conferences were held each year as onsite meetings with approx. 80-100 participants from over 25 countries including patient advocates, leading sarcoma experts and representatives of the pharma industry. The three-day conference focuses on research…

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CTOS & SPAGN: A newly formed, powerful collaboration in sarcomas

  Woelfersheim / Vancouver, November 17, 2022 – Today, the Connective Tissue Oncology Society and the Sarcoma Patient Advocacy Global Network officially announced their collaboration. The two organizations will work together towards achieving the following shared goals: Raise awareness of sarcoma Identify and advance relevant knowledge Define obstacles and challenges to improving sarcoma care Advocate…

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Patient Advocacy
@CTOS 2022

The Annual Conference of the Connective Tissue Oncology Society (CTOS) is the main meeting place for sarcoma experts and all interested in sarcomas each year. In 2022, SPAGN will for the first time ever host a “Patient Advcocay Lounge” during the whole congress as well as a “SPAGN Reception” for patient advocates and everybody interested. SPAGN reception @CTOS…

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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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Working at SPAGN: We are hiring!

  Communications Specialist (m/f/d) Part-time or freelance, remotely You… …are an experienced multi-channel communications specialist with interest or experience in patient advocacy and/or medicine, oncology, healthcare or pharma? … like to work independently and flexibly in an international virtual team? … are hands-on, creative and want to help shaping the future of an established and…

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