Advocacy in Action Award

1st Place - 2000 €

TGCT Support/Life Raft Group, USA - A Real World Evidence Analysis of the Experience of Patients with TGCT

This project includes the development of a patient registry for patients with TGCT where information is collected about demographics, diagnostic journey, symptoms that led to diagnosis vs symptoms throughout journey, providers involved in diagnosis and providers involved in treatment, treatment options such as surgical management and systemic therapies, disease monitoring after treatment, clinical trial interest, and validated patient reported outcome measurements for fatigue, concentration, physical function, emotional and
social well-being, and global perception of health.

Read more about this project here. 

 

2nd Place - 1500 €

Bone Cancer Research Trust and Sarcoma UK, UK- Working together to improve sarcoma diagnosis

Patients in the UK and worldwide experience long delays in receiving a correct diagnosis of sarcoma. Late diagnoses can directly influence outcomes, in addition, patients report a detrimental impact on their quality of life, wellbeing, mental health and trust in their healthcare systems. In prioritization exercises carried out by Sarcoma UK and the Bone Cancer Research Trust, research into improving diagnosis has been highlighted as a high priority by people affected by sarcoma; this preference closely follows the need for research into new and better treatments.

The two charities recognize that their communities want to see progress in this area and are working together to jointly fund research to improve the diagnosis of bone and soft tissue sarcomas.

Read more about this project here. 

 

3rd Place - 500 €
We had such a fantastic array of projects this year that our jury couldn't pick just one, so we ended up with four winners sharing the 3rd place spot!

 

UK : Bone Cancer Research Trust in collaboration with the University of Sheffield, UK - Your guide to follow-up care’: a survivorship focused resource for the primary bone cancer community.

Leading on from earlier projects, a group of University of Sheffield medical students sought to address identified disparities and gaps in information and support for patients & families after the end of treatment. In close consultation with patients, families and medical professionals, they developed a proposal for an innovative new BCRT resource, ‘Your guide to follow-up care’.

The overall aim and purpose of this resource is to support patients and their parents / carers to navigate life beyond their primary bone cancer treatment, providing them with evidence based information and practical advice, shaped by lived experiences, on what to expect throughout survivorship and key considerations for follow-up.

Read more about this project here. 

 

Germany: Deutsche Sarcom-Stiftung - Strategy for Expert: Verified Sarcoma Knowledge on Social Media

The project aims to provide reliable sarcoma knowledge via social media, especially through the Instagram channel @sarkome.de, creating a platform for exchange within a Strong Sarcoma community. In close collaboration with leading Sarcoma experts in Germany, we offer current, reliable information, combat misinformation and promote interaction among those affected on our platform.

A key focus for us has also been: How do we ensure that social media algorithms,  search engines like Google and AI-driven chatbots like ChatGPT recognize us as a reliable source of information, refer to us, and even learn about sarcomas from us, thereby creating better outputs for users?

Read more about this project here.  

Poland: The Polish Sarcoma & Melanoma Patients Association and Institute of Mother and Child - "#5 for" Psychologists, Nurses etc. (High five for) - A Series of psycho-oncgology for various stakeholder groups related to helping cancer patients.

The project "#5for" provides enormous educational value in psycho-oncology for volunteers, nurses, teachers, psychologists, student colleagues, and other people involved in the care of patients suffering from cancers, including sarcomas.

Training beneficiaries can focus on building relations, communication skills, and empathy, which is crucial when working with people with cancer. They gain tools to establish deeper relationships with patients which may have  a significant impact on their quality of life during treatment. This project aims to increase knowledge in the pediatric oncology field.

Read more about this project here.

 

India: V Care - Jankari & Salah (in Hindi)—The Knowledge Spot

This project aims to disseminate  basic  information  in  a  very  simple  and  understandable  way.  Bringing ease in the patients journey and trying to find their balance and helping them getting through.

Information booklets that we have cover a wide range of sensitive and cancer related topics and they have been an integral component of the V Care patient support program. They are provided at no cost to patients who come to the hospitals that we visit by patient navigators and advocates who work at our helpdesk. Participants in our awareness initiatives are provided with these booklets, which contain fundamental general information, and they are displayed at the hospital desks or distributed in the wards.

Read more about this project here.