Together We Can Make A Difference
For Those Affected By Sarcomas!

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.

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’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’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

The 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:

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 growing collaborative network?

Then you've come to the right place at Sarcoma Patients Advocacy Global Network (SPAGN).
We are the international network of currently 57 national patient advocacy groups dealing with a special group of rare cancers = sarcomas, gastrointestinal stromal tumors (GIST), bone sarcomas and desmoid tumors. We empower/support each other and provide a common, influential, international patient voice. We work in partnership with leadings sarcoma experts, scientists, pharma industry and other stakeholders to foster research, to improve the treatment and care of sarcoma patients and to increase the visibility of sarcoma among policy makers and the public. Our joy and passion in working across borders drive us to achieve necessary change together with our collaborators.

We are looking for a Communications Specialist, experienced in qualified project management!

 
Your tasks:

• Development and delivery of multi-channel communication and engagement strategies for SPAGN (traditional/new media), effective use of resources and ensuring efficient production and consumption of content
• Use digital media effectively to raise our profile and reach agreed audiences and take responsibility for managing digital content strategy
• Implementation and creation of communication content, including website articles, social media content, newsletters, etc.
• Further development and maintenance of the website
• Establishment and expansion of communication with SPAGN member groups, central contact for current and future groups and support in the establishment and development of new groups through mentoring processes (in cooperation with the board/executive director)
• Organizational support for the board and the executive director
• Support in the pursuit and implementation of the strategic goals set by the Board of Management as well as participation in project and activity planning for the coming years

Your qualification and experience:

• 3 - 5+ years of experience in a similar role - with experience in the healthcare sector, in the pharmaceutical industry or in a communications agency or in a patient advocacy organization
• Strategic thinking
• Exceptional organizational skills and attention to detail
• Knowledge of using Microsoft Office
• Strong interpersonal skills and a high level of professionalism when working with diverse groups of people from different cultural and professional backgrounds
• Ability to work flexibly, proactively and in a virtual environment, independently or as part of a team, and as part of an international remote team
• Excellent verbal and written communication skills especially in English
• Keen interest in working in patient advocacy and the healthcare sector
• Flexibility and mobility for international travel, e.g. to join meetings or medical conferences

We offer:

• The opportunity to thrive in an intense, rewarding do-it-yourself environment and help shape the future of a growing international network
• Immediate start possible
• Flexible working hours - mainly in the home office
• The opportunity to work on high impact projects with a dynamic and international team

You don’t meet every single requirement? We are dedicated to building and providing a diverse, inclusive and authentic workplace, so if you’re excited about this role but your past experience doesn’t align perfectly with every qualification in the job description, we encourage you to apply anyways. You may be just the right candidate for this.

Please send us your application to This e-mail address is being protected from spambots. You need JavaScript enabled to view it. and we are looking forward to getting to know you!

If you have any question, please reach out to
Kathrin Schuster, SPAGN Executive Director
Email This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

Photo: Eric Prouzet on Unsplash