Advocacy in Action Award
CALL TO ACTION!
“SPAGN Advocacy in Action Award 2025” and “Paola Gonzato Memory Award” for best projects in sarcoma patient advocacy.
Dear SPAGN Member Groups!
In 2017, we announced the “Advocacy in Action Award” for the first time and were amazed to receive such high-quality, outstanding and interesting submissions during the last years. Reason enough for us to continue to make some noise about the projects and initiatives that are being implemented each day, each month or each year in various countries.
We therefore invite you to participate in the “SPAGN Advocacy in Action Award 2025”!
New for 2025: Special Award for Bone Sarcomas!
In addition, we have a special treat for Bone Sarcoma Groups for 2025: We are pleased to introduce the Paola Gonzato Memory Award, sponsored by the Fondazione Paola Gonzato Rete Sarcoma ETS, Italy. Find out more about it below.
About the Advocacy in Action Award
As usual, the 2025 Advocacy in Action Awards will be granted to three projects.
The winning projects will receive:
- 1st Prize 2,000 €
- 2nd Prize 1,500 €
- 3rd Prize 1,000 €
We are looking for projects, initiatives, campaigns fulfilling the following eligibility criteria:
Participants:
- All SPAGN member groups
Type of projects:
- Should be sarcoma specific, excluding bone sarcomas (please
see below “Paola Gonzato Memory Award” for bone sarcomas) - For a single entity or for several diseases
- Already completed or ongoing projects (not 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
The projects are evaluated by a select committee made up of patient advocate leaders and experts in sarcoma care. The finalists are each given the opportunity to present their project at the SPAGN Annual Conference, and the winners are announced at a special awards dinner.
To apply, you will need to review these guidelines, then download and complete your application form here.
About the "Paola Gonzato Memory Award"
This award call invites SPAGN member organizations to submit impactful projects in the field of bone sarcomas. Projects should be developed by member organizations with regional or national reach and should demonstrate tangible outcomes in the advocacy or management of health services, or in improving patients’ quality of life.
Key requirements:
- Projects must be submitted by SPAGN member organizations with regional or national representation.
- Entries should showcase completed, evidence-based advocacy work that has positively influenced healthcare services or enhanced patients’ quality of life.
- Each organization may submit only one application.
One project will be awarded a prize of 3,000 EUR, to be granted to a single winning organization.
The winning projects/teams will receive 3.000 EUR.
The award will be granted to one winner only and is kindly sponsored by the Fondazione Paola Gonzato Rete Sarcoma ETS, Italy.
To apply for the Paola Gonzato Memory Award, you will need to review the guidelines above, then download and complete your application form here.
The Application Process for both Awards
Complete the attached form and send it with attachments by email to info@sarcoma-patients.org
Deadline for submission is February 28, 2025.
Award Ceremony: During the SPAGN Annual Conference 2025, April 11-13, Washington D.C.
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: “Working together, making a difference.”
With kind regards,
The SPAGN Board of Directors & Team and Dr. Ornella Gonzato, Fondazione Paola Gonzato Rete Sarcoma ETS
Advocacy in Action Award 2023/24 Winners
Patient advocacy serves as a vital mechanism for amplifying voices, driving action, and effecting positive change. It is instrumental in addressing unmet medical needs, fostering improvements, and achieving tangible outcomes. 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. Our aim is to elevate and recognize exceptional initiatives, projects, campaigns, and the dedicated individuals steering these efforts.
1st Place - 2000 €
TGCT Support/Life Raft Group, USA - A Real World Evidence Analysis of the Experience of Patients with TGCT
This project includes the development of a patient registry for patients with TGCT where information is collected about demographics, diagnostic journey, symptoms that led to diagnosis vs symptoms throughout journey, providers involved in diagnosis and providers involved in treatment, treatment options such as surgical management and systemic therapies, disease monitoring after treatment, clinical trial interest, and validated patient reported outcome measurements for fatigue, concentration, physical function, emotional and
social well-being, and global perception of health.
Read more about this project here.
2nd Place - 1500 €
Bone Cancer Research Trust and Sarcoma UK, UK- Working together to improve sarcoma diagnosis
Patients in the UK and worldwide experience long delays in receiving a correct diagnosis of sarcoma. Late diagnoses can directly influence outcomes, in addition, patients report a detrimental impact on their quality of life, wellbeing, mental health and trust in their healthcare systems. In prioritization exercises carried out by Sarcoma UK and the Bone Cancer Research Trust, research into improving diagnosis has been highlighted as a high priority by people affected by sarcoma; this preference closely follows the need for research into new and better treatments.
The two charities recognize that their communities want to see progress in this area and are working together to jointly fund research to improve the diagnosis of bone and soft tissue sarcomas.
Read more about this project here.
3rd Place - 500 €
We had such a fantastic array of projects this year that our jury couldn't pick just one, so we ended up with four winners sharing the 3rd place spot!
UK : Bone Cancer Research Trust in collaboration with the University of Sheffield, UK - Your guide to follow-up care’: a survivorship focused resource for the primary bone cancer community.
Leading on from earlier projects, a group of University of Sheffield medical students sought to address identified disparities and gaps in information and support for patients & families after the end of treatment. In close consultation with patients, families and medical professionals, they developed a proposal for an innovative new BCRT resource, ‘Your guide to follow-up care’.
The overall aim and purpose of this resource is to support patients and their parents / carers to navigate life beyond their primary bone cancer treatment, providing them with evidence based information and practical advice, shaped by lived experiences, on what to expect throughout survivorship and key considerations for follow-up.
Read more about this project here.
Germany: Deutsche Sarcom-Stiftung - Strategy for Expert: Verified Sarcoma Knowledge on Social Media
The project aims to provide reliable sarcoma knowledge via social media, especially through the Instagram channel @sarkome.de, creating a platform for exchange within a Strong Sarcoma community. In close collaboration with leading Sarcoma experts in Germany, we offer current, reliable information, combat misinformation and promote interaction among those affected on our platform.
A key focus for us has also been: How do we ensure that social media algorithms, search engines like Google and AI-driven chatbots like ChatGPT recognize us as a reliable source of information, refer to us, and even learn about sarcomas from us, thereby creating better outputs for users?
Read more about this project here.
Poland: The Polish Sarcoma & Melanoma Patients Association and Institute of Mother and Child - "#5 for" Psychologists, Nurses etc. (High five for) - A Series of psycho-oncgology for various stakeholder groups related to helping cancer patients.
The project "#5for" provides enormous educational value in psycho-oncology for volunteers, nurses, teachers, psychologists, student colleagues, and other people involved in the care of patients suffering from cancers, including sarcomas.
Training beneficiaries can focus on building relations, communication skills, and empathy, which is crucial when working with people with cancer. They gain tools to establish deeper relationships with patients which may have a significant impact on their quality of life during treatment. This project aims to increase knowledge in the pediatric oncology field.
Read more about this project here.
India: V Care - Jankari & Salah (in Hindi)—The Knowledge Spot
This project aims to disseminate basic information in a very simple and understandable way. Bringing ease in the patients journey and trying to find their balance and helping them getting through.
Information booklets that we have cover a wide range of sensitive and cancer related topics and they have been an integral component of the V Care patient support program. They are provided at no cost to patients who come to the hospitals that we visit by patient navigators and advocates who work at our helpdesk. Participants in our awareness initiatives are provided with these booklets, which contain fundamental general information, and they are displayed at the hospital desks or distributed in the wards.
Read more about this project here.
May 2023
Advocacy in Action Award 2022 Winners announced
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 congratulate the winners of the SPAGN Advocacy in Action Award 2022:
1st Prize - 2.000 €
DigiSwasthya Foundation, India - Telemedicine For Cancer Care in Rural India
Providing remote healthcare in Sant Kabir Nagar, Uttar Pradesh, a rural area in northern India to patients who would not otherwise have access to sarcoma experts or specialised care centres. The project evolved from a simple telehealth consultation into a comprehensive solution that includes primary health checkups, expert opinions from specialists, accurate diagnoses, follow-up care, and support for medication, diagnostic tests, counselling, and skill development post treatment.
The project uses a hub-and-spoke model to target patients and individuals living in rural parts of India who either have not received a proper diagnosis due to lack of awareness among their local medical providers or who have been diagnosed but cannot access the necessary medical care and treatment where they live.
Read more about this project here.
2nd Prize - 1.250 €
Info Sarcomes, France - Sarcoma Symptoms Awareness Campaign
Development of three short videos presenting the first symptoms of sarcoma – lump, bone pain, hematoma – to aid patients and healthcare professionals in awareness of what may be the beginning of a very serious and severe disease.
This initiative leads to early intervention and contributes to a positive impact on the patient’s quality of life and odds of survival.
Read more about this project here.
2nd Prize - 1.250 €
FMPJC, Spain - Scholarships for Training & Research in Sarcomas
An annual project aiming to promote the development of sarcoma treatment and prevention measures by granting scholarships in three critical areas: Academic Training, Clinical Training, and Research.
Read more about this project here.
We thank all applicants for their submissions - the decision was difficult as all projects showed wonderful & important work!
June 2022
Advocacy in Action Award 2021 Winners announced
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 congratulate the winners of the SPAEN Advocacy in Action Award 2021:
Sarcoma UK - Research Patient Involvement Programme
- Establish a framework to bring the perspectives of people with personal experience of sarcoma
- Influence the direction of our research funding
- Able to base research funding decisions equally on the scientific merit of the applications and their relevance for people affected by sarcoma
Read more abou this project here.
The Sachin Sarcoma Society, India: Spreading Awareness & Building Companionship among Desmoid Tumor Patients
- Support desmoid tumor patients and their caregivers during the Covid-19 pandemic
- Positive response and the amazing impact this initiative for the patients and their caregivers
- Continue with this project on a long-term basis
Read more abou this project here.
We thank all applicants for their submissions - the decision was difficult as all projects showed wonderful & important work!
The winning projects in the respective categories (traditional / innovative COVID-19-related) will receive 2.000 € each!
April 2021
SPAEN Advocacy in Action Award 2020 winners have been announced!
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 honor 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 2020”!
However, we acknowledged that we all face a different situation due to the coronavirus pandemic. This confronts all of us with new challenges, but also creates room for new and innovative ideas and solutions.
Giving credit to this new situation, we decided to award two prices for the “SPAEN Advocacy in Action Award 2020”:
• One prize for one for traditional patient advocacy projects and
• one for innovative COVID-19 related projects
We have received in total 10 submissions (6 traditional projects/4 COVID-related projects):
Traditional projects:
- Netherlands: Patiëntenplatform Sarcomen/Chordoma Foundation/Bone Cancer Research Trust/Sarcoma UK - Synergy through cooperation: Collaboration patient organisations servicing patients with primary bone cancer
- Netherlands: Patientenplatform Sarcomen - Report 'Sarcoma Care in the Netherlands'
- Poland: The Polish Sarcoma and Melanoma Patients Association - 13th Oncorun Together for health! – in times of pandemic
- Spain: Fundacion mari Paz Jimenez Casado - 2020 Programme of FMPJC Scholarships / Aid for Training and Research in Sarcomas
- Sweden: Sarkomföreningen - The campaign "We hade tur"/"We are lucky"
- UK: Bone Cancer Research Trust - Bone Cancer Awareness Initiative - saving lives through earlier diagnosis
COVID-related projects:
- India: VCare/SPANDAN - Virtual connections amidst social distancing (COVID-related project)
- Poland: The Polish Sarcoma and Melanoma Patients Association - „The Shield for Oncology” (COVID-related project)
- UK: Bone Cancer Research Trust - A dedicated primary bone cancer Support & Information Service and its response to COVID-19 (COVID-related project)
- UK: GIST Cancer UK - Patient ‘Vox Pops’ (COVID-related project)
The winner in the category "COVID-19 related projects" is:
SPANDAN/VCare - see the project summary here.
The two winners in the category "Traditional patient advocacy projects" are:
Bone Cancer Research Trust (see the project summary here) and Polish Sarcoma and Melanoma Group (see the project summary here)
February 2020
SPAEN Advocacy in Action Award 2019: Winners announced
For the third time SPAEN was calling again for submission of outstanding projects and initiatives for our SPAEN Advocacy in Action Award 2019. We received 12 submissions from 10 member organisations from 5 countries, so this shows the motivation among members to present their projects.
These are the winners of the Advocacy in Action Award 2019:
1. Desmoid Foundation Italy for “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”
2. Friends of Max, India, for "Chai for cancer"
2. Sarcoma UK for "The Accidental Activist"
3. The Bone Cancer Research Trust (BCRT) for the "Bone Cancer Conference"
A huge thank you to your fantastic jury and to all groups who entered submissions:
- India: Friends of Max - Chai for cancer
- India: V Care - Squash a mile
- "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”
- Italy: Orchestra per la Vita - Epithelioid Sarcoma Project - TRANSLATIONAL Study
- "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"
- Italy: Trust Paola Gonzato-Rete Sarcoma Onlus - INFOSARCOMA
- Italy: A.I.G. Associazione Italia GIST Onlus - NATIONAL GIST CONFERENCE, “20 years after Imatinib”
- "Spain: Fundacion Mari Paz Jimenez Casado - 2019 Program of the FMPJC Scholarships/Aid for Training and Research in Sarcomas"
- Switzerland: Swiss Sarcoma - Development of a vaccine to prevent relapse in liposarcoma
- UK: BCRT - Bone cancer conference
- UK: BCRT - ICONIC
- UK: Sarcoma UK - The Accidental Activist
February 2019
SPAEN Advocacy in Action Award 2018: Winners announced
SPAEN Advocacy in Action Award 2018: Winners announcedPatient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. The projects that were entered for the "Sarcoma Advocacy in Action Award 2018" once again showed this impressively! All entries were fantastic and the jury had a hard job to decide on the winners. But they did. These are the winners of the "Sarcoma Advocacy in Action Award 2018":
1. Das Lebenshaus, Germany for the "German Sarcoma Conference"
2. GIST Support UK/PAWS GIST, UK for the "PAWS-GIST clinic"
3. Patientenplatform Sarcomen, The Netherlands for the "Patient Forum Miner"
Thanks to all the groups that entered their fantastic work - you can find information about all projects that were entered here:
- Polish GIST Patients Aid Association, Poland, for
"The 4/2018 issue of the journal ‘Voice of the Oncological Patient’,devoted to patients suffering SARCOMA" - #cycle4sarcoma, Finland, for
"#cycle4sarcoma, social media interface, cycling and fundraising for sarcoma" - The Bone Cancer Research Trust (BCRT) / The National Ewings Multi-Disciplinary Team Advisory Group (NEMDT), UK, for the
"Patient Perspectives of the Cancer Multi-Disciplinary Team" - AEAS-Asociación Española de Afectados por Sarcomas, Spain, for the
"International Sarcoma Day in Spain. Beyond sarcoma: people, words and projects with soul.”
Thanks also to our jury Barbara Tamagni, Sarah McDonald, Kai Pilgermann, Nikhil Guhagarkar as patient adovcates and Winette van der Graaf, Mikael Eriksson, Robin Jones and Bernd Kasper from the expert community.
February 2018
1st SPAEN Advocacy in Action Award for best projects in sarcoma patients advocacy was awarded
1st SPAEN Advocacy in Action Award for best projects in sarcoma patients advocacy was awardedWe are very happy to have received submissions of outstanding projects and initiatives for our SPAEN Advocacy in Action Award 2017.
The best projects have been awarded by a jury of 8 members consisting of patient advocates and experts. Those projects are:
- Friends of Max, India: Together We Share and Learn - Ongoing life-long relationship management of GIST patients & caregivers
- Polish Sarcoma Patients Association, Poland: ONCORUN - Together for health!
- Associazione Paola, Italy: 1. Paper on sarcoma/rare cancer health policies, 2. Sarcoma meeting for healthcare professionals and policy makers, 3. Funding Ewing sarcoma research (travel scholarship 2017/2018), 4. Lobbying in order to relax the rules for the “compassionate use” in rare cancers