Call to action: SPAEN Advocacy in Action Award 2019

SPAEN Advocacy in Action Award for best projects in sarcoma patients advocacy

Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We believe it is time to shout out about how important patient advocacy in sarcomas is – for patients, caregivers, healthcare professionals or anyone interested in sarcomas. We want to celebrate and honour outstanding practices, projects, initiatives or campaigns and the creators working behind these activities.

We therefore invited you to participate in the “SPAEN Advocacy in Action Award 2019”!

We have received 12 submissions:

  1. India: Friends of Max – Chai for cancer
  2. India: V Care – Squash a mile
  3. “Italy: Desmoid Foundation Italy – “A bridge for Desmoid Tumor: physicians and patients share knowledge, fears, emotions and troubles to understand better the different point of view of this pathology””
  4. Italy: Orchestra per la Vita – Epithelioid Sarcoma Project – TRANSLATIONAL Study
  5. “Italy: Orchestra per la Vita – Epithelioid Sarcoma Project – Comparative Assessment of Antitumor Effects and Autophagy Induction as a Resistance Mechanism by Cytotoxics and EZH2 Inhibition in INI1-Negative Epithelioid Sarcoma Patient-Derived Xenograft”
  6. Italy: Trust Paola Gonzato-Rete Sarcoma Onlus – INFOSARCOMA
  7. Italy: A.I.G. Associazione Italia GIST Onlus – NATIONAL GIST CONFERENCE, “20 years after Imatinib”
  8. “Spain: Fundacion Mari Paz Jimenez Casado – 2019 Program of the FMPJC Scholarships/Aid for Training and Research in Sarcomas”
  9. Switzerland: Swiss Sarcoma – Development of a vaccine to prevent relapse in liposarcoma
  10. UK: BCRT – Bone cancer conference
  12. UK: Sarcoma UK – The Accidental Activist

Advocacy in Action 2019 Logo

The winning projects/teams will receive

  • 1st          2.000 €
  • 2nd         1.500 €
  • 3rd          1.000 €

A jury of 8 representatives – patient advocates and healthcare professionals – will evaluate the submissions and will select the winners.

Basic Conditions

We are looking for projects, initiatives, campaigns fulfilling the following eligibility criteria:

Participants: All SPAEN member groups
Type of projects:

  Should be sarcoma specific (Soft Tissue, Bone, GIST, Desmoid, Chordoma)

  • For a single entity or for several diseases
  • Already completed or ongoing projects
    (Please: Not just ideas or planned projects!)
Thematic areas:
  •  Patient information & education
  •  Patient support
  •  Improving the quality of life
  •  Social media and digital communications
  •  Generating “real world evidence” (registries, survey, data mining etc.)
  •  Advocacy & lobbying the healthcare system
  •  Being involved or driving sarcoma research


Application Process

Complete the application form and send it with attachments by email to

Deadline for submission: 1st of December 2019

Award Ceremony:           During the 10th SPAEN Annual Conference 31.1. – 2.2.2020, Milano, Italy

Every application will be recognised with a Certificate of Nomination. The best 6 submissions will be shortlisted and the winners announced at the 10th SPAEN Annual Conference 2020 in Milano, Italy.

Please find here for download:


Assessment Criteria

Success may come in many shapes, sizes and stories. Recognizing this, we have merely set up some guidelines in order to make projects comparable. Please be mindful when you are making your nomination to provide clear examples of success and avoid general statements.

Relevant for the assessment of projects:

  • Impact on or for patients, caregivers and community (regionally, nationally, internationally)
  • Patients reached
  • Potential of adaption / reproducibility by other PAGs
  • Sustainability
  • Cost / Funding
  • Grade of innovation

Please note: Not all criteria have to be fulfilled!

We are very much looking forward to receiving your applications and hearing about your successes in advocacy, because: “Together we can make a difference for those affected by sarcomas”.

Any questions? Please contact us at

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