Blog & News
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?
Read MoreLooking 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.
Read MoreGlobal 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…
Read MoreHow 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?
Read MoreAdvocacy 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.
Read MoreRecording available: SPAGN Knowledge Spot – Gamma Secretase Inhibitors in Desmoid Tumors
“Gamma Secretase Inhibitors – A new paradigm in Desmoid Tumors?” December 1, 2022, 5pm CET / 11am ET / 9:30pm IST Update on medical therapies in desmoid tumors, by Prof. Bernd Kasper, University Hospital of Mannheim, Germany, moderated by Christina Baumgarten, SOS Desmoid Germany, SPAGN Board Member A joint event by SPAGN and the Sarcoma…
Read MoreSPAGN 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…
Read MoreCTOS & 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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