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:

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

These are the winners of the "Sarcoma Advocacy in Action Award 2019":

1. 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”

2. India: Friends of Max - Chai for cancer
2. UK: Sarcoma UK - The Accidental Activist

3. UK: BCRT - Bone cancer conference

Thanks also to our jury made of members of the expert community and patient advocates.

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...