What to know about the SPAGN Community Advisory Working Group

For researchers, clinicians and pharma companies seeking input from patients, caregivers and/or patient advocates

If you are a researcher, clinician or a company representative and are interested in the sarcoma patient perspective, please reach out to us by email with your specific request.

What is SPAGN’s role?

SPAGN acts as a facilitator, helping to bridge the gap between patients, patient representatives, and industry stakeholders. The organization is responsible for screening and selecting international patients and representatives, ensuring a diverse range of perspectives to foster comprehensive dialogue. Additionally, SPAGN handles the preparation and organization of CAWG meetings, contracting and financial reimbursements.

Does SPAGN accept all projects?

While we strive to accommodate all inquiries, we also reserve the right to decline projects or refer them to other relevant organizations. Due to capacity constraints, please know that we are unable to handle all projects. We will therefore focus primarily on international initiatives and research with a high impact for individuals affected by sarcoma.

Additionally, we must respectfully decline inquiries from third parties, such as agencies or intermediaries, seeking insights for purposes like pitch presentations, due to capacity limitations and relevance. Our work prioritizes the benefit of sarcoma patients and their families.