The Desmoid Tumour Foundation of Canada is seeking to better understand the experiences of people living with desmoid tumours and those who care for them.
Through this survey, we want to hear about the real-life impact of desmoid tumours, including:
- Daily life
- Physical and emotional well-being
- Work and family activities
- Access to care
- Experiences with available treatments
Why your input matters
Your responses may help inform future patient submissions to Canadian health technology assessment (HTA) organizations, including the Canada’s Drug Agency (CDA-AMC) and, where appropriate, INESSS.
Patient and caregiver perspectives are an important part of understanding how treatments affect people beyond clinical evidence. Your experiences can help ensure that the priorities, challenges, and needs of the desmoid community are represented in these processes.
If you are living with a desmoid tumour or caring for someone who is, we invite you to share your experience.
Your voice matters. Your experience matters. Together, we can help make sure the patient perspective is heard.
Survey closes October 24.