Blog & News
Recording 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…
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…
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…
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…
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.
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…
SPAEN 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…
Sarcoma 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…
UK: The Myrovlytis Trust
UK: The Myrovlytis Trust Back to members Organization Profile The Myrovlytis Trust is a medical research charity dedicated to rare conditions including osteosarcoma. We fund research and create patient-centred resources for people affected by osteosarcoma. We have over 10 years of experience working with the…
100 years Ewing Sarcomas: Learnings from the past, challenges for the future
Over the course of the two-day conference, we took a look on what has been achieved in Ewing Sarcoma so far, what the Status Quo of Ewing management currently is and where the future might take us. Over 300 experts from all…