Advocacy in Action Award

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.

ARTIS-Uli Deck

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!

October 2022

SPAEN Advocacy in Action Award 2022: Ready for submissions

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 “SPAGN Advocacy in Action Award 2022”!

The winning projects/teams will receive

  • 1st                              2.000 €
  • 2nd                            1.500 €
  • 3rd                             1.000 €

A jury of patient advocates and healthcare professionals will assess the submissions and select the winners.

Deadline for submission is March 31, 2023.

Please find here the following documents:

The award winners will be announced during the SPAGN Annual Conference 2023, May 11-13, 2023 in Dublin, Ireland.

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:

  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 "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

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