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

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) )

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:

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
11. UK: BCRT - ICONIC
12. 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:

1. Friends of Max, India: Together We Share and Learn - Ongoing life-long relationship management of GIST patients & caregivers
2. Polish Sarcoma Patients Association, Poland: ONCORUN - Together for health!
3. 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...