SPAEN becomes SPAGN

SPAGN Logo 2022 RZ 72

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 the fact that the global work of SPAEN/SPAGN should now also be reflected in the name of the organization.

Global ben white unsplash

Photo by Ben White on Unsplash

SPAEN had already opened the network to member organisations outside of Europe in 2016. Today, 56 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 organisation 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), re-elected Chair of the SPAGN Board.

The globalisation of SPAGN was underlined by the fact that during the 2022 annual general meeting, Ms. Denise Reinke (USA) - in addition to Ms. Vandana Gupta (India) - a second member from outside Europe was elected to the board.

SPAGN_Mission-Vision.jpgSPAGN’s New Mission:

SPAGN is the global network of Sarcoma Patient Advocacy Organisations 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 Core ValuesSPAGN’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 Strategic GoalsThe seven strategic objectives defined or revised in the strategic planning process will soon be presented in detail by the SPAGN Board of Directors. In an ongoing process until autumn 2022 - following the seven strategic objectives - the SPAGN Board Members are planning detailed activities and projects for 2023 and beyond.

With the name change, the website domain and e-mail addresses will also change: In future, SPAGN will be accessible via www.sarcoma-patients.org (the old e-mail and web address(es) will continue to be used temporarily). 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.

 

SPAGN logos for download:

  image PNG 72dpi (11 KB)   image PNG 144dpi (24 KB)   image PNG 300dpi (139 KB)
  image JPG 300dpi CMYK (977 KB)   image JPG 300dpi RGB (314 KB)  

 

 

 

SPAEN at a glance

Welcome to Sarcoma Patients EuroNet!

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. In close collaboration with experts, the healthcare industry and other stakeholders, SPAEN is working towards improving treatment and care for GIST, Desmoid and sarcoma patients by providing information and support and increasing the visibility of sarcomas with policymakers and the public.

To achieve this, SPAEN has taken several steps: It established a Medical Advisory Board with the leading European experts in GIST, Sarcomas and Desmoids. It also supports international projects as well as advocacy and expert groups who share the same ideas and visions: Improving the treatment of rare cancers. SPAEN in turn is supported by leading international sarcoma experts and expert groups.

Our Objectives

Our Objectives

  • Identify problems, challenges, access issues and unmet medical needs in sarcomas. Find solutions and improve the situation by collaborating with leading sarcoma experts, researchers, industry and other relevant international stakeholders/initiatives in an outcome-oriented way.
  • Sarcoma patients need timely and accurate diagnosis and need to be treated according to guidelines; ideally as early as possible in multidisciplinary sarcoma expert centres. SPAEN advocates and supports the implementation of these structures and pan-European collaboration between these centres.
  • Clinical research, studies and generating evidence/data are essential parts of the process of developing better and innovative treatment solutions. SPAEN aims to be involved as early as possible in clinical trials, to try to improve patient’s access to studies and to support meaningful research – following the specific needs of rare cancer patients.
  • Sarcoma patients and their relatives need a strong “United Sarcoma Patient Voice” and strong “National Patient Support Opportunities”. That’s why SPAEN cares for their members – the existing national patient organisations and encourages the creation of new ones.

Our Vision

All sarcoma (incl. GIST) patients have access

  • to timely and correct diagnosis,
  • to information about their specific sarcoma-subtype
  • to treatment and care in specialised centres and
  • to innovative treatment options incl. clinical trials.

Our Mission

Improving the situation of sarcoma, GIST and desmoid patients
by

  • building one strong International Sarcoma Voice
  • cooperating with all relevant international stakeholders
  • in an outcome-oriented way and
  • strengthening this international coalition of national Sarcoma-, GIST- and Desmoid Patient Advocacy- and Support Groups

Our Core Values

  • Focused on the needs of the PAGs (patient advocacy groups) and the patients/caregiver
  • Willingness to advocate
  • High quality of information/education/training: Correct, up to date, understandable, independent
  • Cooperative and professional
  • Ethical, transparent, behave with integrity
  • Innovative spirit

Our Founding Members

Switzerland  GIST-Gruppe Schweiz
Germany  sos-desmoid.de
Germany  Das Lebenshaus e.V. GIST, Sarkome
France  AFPG - Ensemble Contre le GIST / Info Sarcomes
France SOS Desmoids
Italy A.I.G. - Associazione Italiana GIST
Poland Stow. Pomocy Chorym Na Miesaki "SARCOMA"
Poland Stow. Pomocy Chorym Na GIST
Romania The Romanian GIST-Network
UK Sarcoma UK
UK GIST-Support UK


SPAEN is legally registered under German law. Membership is open to patient groups working with sarcoma, GIST and desmoid patients all over the world.