The SPAGN Community Advisory Working Group
The SPAGN Community Advisory Working Group (CAWG) is an international group of patients, caregivers, and patient advocates established and operated by SPAGN.
This group works closely with and provides insights and guidance to organizations, researchers, institutions or pharmaceutical companies.
Its goal is to make sure that the needs, concerns, and perspectives of sarcoma patients worldwide are heard, valued, and included in research and care in a truly patient-centric manner. This is achieved through continuous collaboration across borders and open communication among all stakeholders.
Why does SPAGN establish a CAWG?
SPAGN is regularly invited to involve patients and carers with personal experience of sarcoma and its treatment to contribute to academic or commercial research or provide guidance to regulators. We aim to support this important work to make sure the patient perspective is being integrated as early as possible.
SPAGN operates the CAWG, organizes any meetings and serves as intermediate between all parties, in order to provide a safe and supportive environment for patients, carers, and patient advocates.
What we aim to achieve
- Providing researchers, academics, government, policymakers, authorities, and the pharmaceutical industry with advice and input on different issues that impact patients' lives.
- Ensuring patient needs are considered when setting research priorities.
- Support the development of patient-friendly clinical trials and thus make them more accessible for interested patients.
- Empower patients and patient groups to participate meaningfully in research.
Ultimately, the activities within the CAWG should help to achieve our overarching goals of improving the situation, the options and the outcomes of people living with sarcomas.