What to know about the SPAGN Community Advisory Working Group 

We are looking for:  

• Patients or caregivers with lived experience of sarcoma. 

• Sarcoma patient advocates passionate about representing community needs and familiar with the challenges sarcoma patients face in their respective country or region. 

• Sarcoma patients, caregivers and patient advocates with interest and knowledge in research, access, clinical trial development and/or sarcoma-specific drug expertise. 

• Individuals willing to share their perspectives constructively and collaboratively 

Please know that not all of the above-mentioned aspects need to be fulfilled to be able to join. However, a strong understanding of English (both written and spoken) is usually required. 

Interested individuals may apply for SPAGN CAWG by completing this form (please see more information below). The SPAGN Board of Directors will ultimately determine which applicants will be accepted to the SPAGN CAWG pool.  

By joining our CAWG, you can: 

• Have a direct impact on healthcare and research that affects you and your community. 

• Share your experiences to help shape better policies and practices. 

• Network with professionals and other patient advocates. 

• Learn more about the healthcare and research landscape. 

Members may be asked to: 

• Attend the meetings (in-person or virtual) they agreed to participate in. 

• Review documents or proposals before discussions. 

• Provide honest and constructive feedback. 

• Represent the interests of the wider patient community. 

It is required that SPAGN CAWG members sign a confidentiality agreement, and possibly a declaration of interest and a data protection form. This may depend on the individual request. 

• SPAGN serves as a neutral facilitator, bridging the gap between patients, patient representatives, and industry stakeholders. 

• SPAGN is responsible for screening and selecting international patients and representatives who can contribute diverse perspectives to ensure a comprehensive dialogue. 

• SPAGN is responsible for the preparation and organization of CAWG meetings. This includes mostly logistical arrangements and preparation and follow-up of meetings with the participants. 

• SPAGN oversees managing contracts with companies. This involves ensuring that agreements protect patient rights, confidentiality, and intellectual property while clearly defining roles, responsibilities, and expectations of all parties involved. 

• SPAGN manages compensation and financial aspects. This includes setting up compensation frameworks that align with ethical guidelines while safeguarding the independence of patient perspectives. 

The time commitment varies but typically includes: 

• Scheduled meetings  

• Time for reviewing materials and provide feedback. 

Details of the specific ask will always be shared in advance to any commitment from your side. 

No formal qualifications are required. What’s most important is: 

• Willingness to share your lived experience. 

• Ability to listen to and collaborate with others. 

• Commitment to the CAWG’s goals. 

Sometimes there may be a payment for involvement, sometimes it is undertaken on a purely voluntary basis. 

Interested patients, caregivers, or patient advocates will always be contacted in advance to be informed about the relevant details (topic, time required, timelines, and financial compensation). CAWG members are under no obligation to accept any request we make. 

If you are interested in the SPAGN CAWG we’d ask you to fill out the following form: https://docs.google.com/forms/d/e/1FAIpQLSedXnTUDrDDS-OnK2UxfW5a5MEa1J9pkvk_L9F5EQEYOQmB4g/viewform 

Based on your responses to these questions, we can better understand your skills, competencies, and interests, and tailor requests to you accordingly. 

Please know: You will always be contacted and your agreement obtained before your contact details are passed to anyone enquiring, and you are under no obligation to say yes to any request we make. You can withdraw from the SPAGN CAWG at any time by emailing us. 

We will provide a safe and supportive environment for patients, carers, and patient advocates. All agreements, contact information, and related matters will be managed and retained by SPAGN unless otherwise agreed upon. 

Furthermore, there will be no restrictions on what can be said. Participants are encouraged to speak freely, without any obligation to consider corporate interests. The primary focus is on the needs and best interests of patients. 

We have put together FAQs to help you understand further and evaluate for yourself if you are willing to join.