June 2022
SPAEN Advocacy in Action Award 2021 Winners announced during SPAEN Conference 2022
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.
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
pdf Read more about this project here (221 KB) .
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
pdf Read more about this project here (184 KB) .
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!
The SPAEN Advocacy in Actions Award 2022 will be announced in September 2022. Watch our for it!
October 2021
SPAEN Advocacy in Action Award 2021 announced 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 2021”!
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 again two prices for the “SPAEN Advocacy in Action Award 2021”:
• One prize for one for traditional patient advocacy projects and
• one for innovative COVID-19 related projects
The winning projects in the respective categories (traditional / innovative COVID-19-related) will receive 2.000 € each!
A jury of patient advocates and healthcare professionals will evaluate the submissions.
Please find here the following documents:
- Advocacy in Action Award: pdf Call to action (638 KB)
- Advocacy in Action Award: document Application form (83 KB)
The award winners will be announced during the 2022 SPAEN Annual Conference: 28 - 30 Jan 2022, Milan/Italy.
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 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 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-realted projects):
Traditional projects:
- Netherlands: Patiëntenplatform Sarcomen/Chordoma Foundation/Bone Cancer Research Trust/Sarcoma UK - Synergy thourgh 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
pdf
here
(667 KB)
.
The two winners in the caterory "Traditional patient advocacy projects" are:
Bone Cancer Research Trust (see the project summary
pdf
here
(500 KB)
) and Polish Sarcoma and Melanoma Group (see the project summary
pdf
here
(581 KB)
)
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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 “ pdf 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 (191 KB) ”
2. Friends of Max, India, for "
pdf
Chai for cancer
(218 KB)
"
2. Sarcoma UK for "
pdf
The Accidental Activist
(172 KB)
"
3. The Bone Cancer Research Trust (BCRT) for the " pdf Bone Cancer Conference (200 KB) "
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
Patient 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
pdf
"German Sarcoma Conference"
(1.07 MB)
2. GIST Support UK/PAWS GIST, UK for the
pdf
"PAWS-GIST clinic"
(815 KB)
3. Patientenplatform Sarcomen, The Netherlands for the
pdf
"Patient Forum Miner"
(606 KB)
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
pdf "The 4/2018 issue of the journal ‘Voice of the Oncological Patient’,devoted to patients suffering SARCOMA" (616 KB) - #cycle4sarcoma, Finland, for
pdf "#cycle4sarcoma, social media interface, cycling and fundraising for sarcoma" (829 KB) - The Bone Cancer Research Trust (BCRT) / The National Ewings Multi-Disciplinary Team Advisory Group (NEMDT), UK, for the
pdf "Patient Perspectives of the Cancer Multi-Disciplinary Team" (214 KB) - AEAS-Asociación Española de Afectados por Sarcomas, Spain, for the
pdf "International Sarcoma Day in Spain. Beyond sarcoma: people, words and projects with soul.” (437 KB)
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
We 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
Read more here...