FAQs for interested sarcoma patients, caregivers and patient advocates 

We aim to provide clear and timely communication, including: 

• A structured recruitment process with clear instructions 

• Regular updates to keep you informed about the progress of the consultation. 

• Transparent information on logistics, including meeting dates, times, travel arrangements, and expenses. 

• Clarity on whether there will be an honorarium or payment for your time and how this will be managed. 

Meetings can sometimes involve technical terms or complex discussions. Here’s how we ensure you feel supported: 

• You will be introduced to the chairperson and other participants to create a welcoming environment. 

• Efforts will be made to avoid jargon or acronyms, and explanations will be provided as needed. If anything is unclear, feel free to ask. 

• Your contributions are valued, and the chairperson will create space for everyone to share their views. 

Your voice matters, and we are committed to making your participation meaningful. We ensure this by: 

• Acknowledging your input during the meeting and following up on how it will inform decisions. 

• Summarizing key points. 

• Thanking you for your time and insights, both during and after the meeting. 

• Ask for any pre-meeting materials, such as agendas or background documents, to review beforehand. 

• Note down any questions or topics you’d like to address during the meeting. 

• Share any specific needs (e.g., accessibility requirements) with the organizers ahead of time. 

• Please share your thoughts on the meeting’s organization and outcomes with the SPAGN CAWG team. 

• Be assured that your concerns will be addressed respectfully and constructively. 

It’s normal to feel nervous, especially if this is your first consultation. Remember: 

• Your perspective is unique and valuable—your lived experience can provide insights no one else can. 

• Organizers and other participants are there to listen and support you. 

• If you find it difficult to speak during the meeting, you can share your thoughts in writing afterward. 

SPAGN CAWG members might be required to sign a confidentiality agreement, and depending on the specific request, may also need to complete a declaration of interest and a data protection form. However, all contracting with partners, e.g. pharmaceutical companies, and financial reimbursements will be managed by SPAGN.