July 2019
SPAEN Advocacy in Action Award 2019
For the third time SPAEN will be calling again for submission of outstanding projects and initiatives for our SPAEN Advocacy in Action Award 2019. The start of the application period will be around mid of August. Submission deadline will be 1st of December. More information is available here.
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
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"PAWS-GIST clinic"
(815 KB)
3. Patientenplatform Sarcomen, The Netherlands for the
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"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...