Blog & News
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…
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…
Read MoreIntroducing 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.
Read MoreWorking 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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Read MoreThe SPAGN Blog
21 Oct What about phyllodes tumor? Dutch patient advocates honored for pioneering work to develop treatment guidelines This year, SPAGN awarded the third prize of Advocacy in Action Award to the Patiënten Platform Sarcomen in the Netherlands for their project on the management of phyllodes tumors, a rare form of cancer of the breast. By…
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Statement on Discontinued Development of Brigimadlin Oct 24, 2025 | 0 In light of the recent online discussions about brigimadlin, we would like to briefly recap the key information we shared a few weeks ago regarding SPAGN’s engagement in exploring the potential continuation of the drug’s development. We hope this summary helps you… What about…
Read MoreSPAEN becomes SPAGN
Sarcoma Patients EuroNet renamed: Sarcoma Patients Advocacy Global Network (SPAGN) Mission, Vision and Core Values revised Frankfurt/Wölfersheim/Germany On Friday, June 24, 2022, the member organisations of SPAEN voted to rename the association from Sarcoma Patients EuroNet (SPAEN) to Sarcoma Patients Advocacy Global Network, SPAGN for short. The reason for these changes in the statutes was…
Read MoreSarcoma Research Priorities: First results published
In setting the research agenda for cancers it is important to include the unmet needs of patients. As SPAGN, we are listening to sarcoma patients worldwide and bring their input for the agenda to the medical professionals. The results of the first phase of our priority setting partnership project have been published in ESMO Open.…
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