European Survey on the Burden of Disease and Access Barriers for individuals living with Systemic Sclerosis
People living with Systemic Sclerosis (SSc) face a high disease burden and significant inequalities in access to care across Europe. These challenges often lead to serious medical, economic, and psychosocial consequences. Many patients experience high out-of-pocket expenses, limited access to specialist care, complex referral pathways, and insufficient support services. Together, these barriers can negatively impact treatment outcomes, quality of life, and participation in daily life, while also contributing to broader societal effects such as reduced productivity, early retirement, and long-term disability.
To address these issues, FESCA, is working on a comprehensive European survey to better understand the real-life impact of Systemic Sclerosis and the barriers patients face when accessing care.
About the project
This large-scale initiative will collect real-world, patient-reported data across Europe and will explore:
- The medical and non-medical costs of living with SSc (including treatment, transport, home adaptations, and productivity loss)
- Healthcare resource use and access to specialist services
- Quality of life and psychosocial impact
- Barriers to accessing timely and appropriate care
Participants will include:
- Adults (18+) living with Systemic Sclerosis
- Caregivers of adult people living with SSc
Why your participation matters
This survey is a crucial opportunity to ensure that the lived experiences of people affected by Systemic Sclerosis are reflected in future actions and policies. By taking part, you will help generate robust evidence on both a European and national level.
The findings will:
- Highlight inequalities in access to care across countries
- Identify gaps in healthcare systems
- Strengthen advocacy efforts aimed at improving outcomes and reducing inequities
Launch and availability
The survey will be launched in autumn and will be available in multiple languages to ensure accessibility across Europe. We encourage all members, patients, and caregivers to participate and to share the survey widely within their networks.
FESCA would like to sincerely thank our sponsors for their support in making this project possible. Their contribution enables us to amplify the patient voice and generate the evidence needed to drive meaningful change across Europe.
