The collaborative association Sarcoma Patients EuroNet (SPAEN) was formed and founded by 11 European GIST, Desmoid and Sarcoma advocacy and support groups April 6th, 2009 in Bad Nauheim/Germany. Ever since, SPAEN has been working in close collaboration with experts, the healthcare industry and other stakeholders, towards improving treatment and care for sarcoma, GIST and desmoid and sarcoma patients by providing information and support and increasing the visibility of sarcomas with policymakers and the public.
In 2016, SPAEN opened the network to member organizations outside of Europe. In June 2022, the SPAEN member organizations voted to rename the association from Sarcoma Patients EuroNet (SPAEN) to Sarcoma Patients Advocacy Global Network, SPAGN for short, to reflect SPAGN's global work in the name of the organization.
Today, over 50 member groups from all 5 continents gather under the umbrella of SPAGN, representing a strong and united voice for sarcoma patients around the globe.
“The clear global orientation of the organization plays a decisive role not only in the name, but also in the recently revised strategy. A full strategic planning process initiated by the SPAEN/SPAGN Board of Directors and implemented with the support of additional members describes seven core objectives over the next four years. The vision, mission and core values have also been adjusted” explains Markus Wartenberg (Germany), Chair of the SPAGN Board of Directors.
SPAGN’s New Mission:
SPAGN is the global network of Sarcoma Patient Advocacy Organizations who support one other and provide a common, influential, international patient voice. Our joy and passion in working across borders drive us to achieve necessary change together with our collaborators.
In SPAGN’s work, there remains a clear focus on achieving change for those affected by sarcoma. This is done on the one hand by providing information and assistance for national groups, but also by representing patients' interests in international committees and interest groups.
SPAGN’s Vision is that one day sarcomas will be preventable or curable. Until then, patients, experts and other stakeholders are working together globally to
- drive sarcoma research
- improve early and correct diagnosis
- secure timely access to interdisciplinary expert-care
- provide patient-oriented information and support
Our common aim is to ensure that more sarcoma patients will live longer with a better quality of life.
SPAGN’s Core Values:
Gerard van Oortmerssen (Netherlands), Co-Chair of the SPAGN-Board states: “We define values as the principles that SPAGN stands for and that we consider important, worthwhile and morally good. Such values provide general orientation and guidance for situations, people and actions both internally and externally.”
The defined (revised) values are:
- We are focused on the needs of our member organizations and sarcoma patients / carers
- We are motivated to advocate proactively based on evidence
- We strive for a high quality of information and education: up-to-date, correct, understandable, editorially independent
- Our working style is reliable, transparent, team- and result-oriented
- As a global organization, we do not intervene directly in individual countries, we behave in a culturally sensitive
manner, free of political or religious differences
SPAGN is looking forward to an even more intensive cooperation with the member groups, but also with important partners in the field of sarcomas, in order to jointly achieve the goal set out in our vision:
Working together, making a difference.