Your experience can help shape better support for caregivers and people living with systemic sclerosis.

Informal caregivers often provide essential practical and emotional support to people living with complex chronic diseases such as systemic sclerosis. However, the physical, emotional, social, and practical challenges they face, and the information and support they may need themselves are still not sufficiently understood.

The Rehabilitation Centre for Scleroderma at Reha Rheinfelden, Switzerland, is conducting an online survey to better understand the experiences and needs of informal caregivers of people living with systemic sclerosis.

By sharing your experience, you can help make caregivers’ needs more visible. Your responses can help identify where better information, practical guidance, emotional support, or professional assistance is needed. The findings will contribute to the development and improvement of rehabilitation, counselling, and support services that better reflect the real-life needs of caregivers and people living with systemic sclerosis.

The survey is completed once online and takes approximately 20–25 minutes. Participation is voluntary, anonymous and confidential.

Terminology Clarification Scleroderma Australia does not use or endorse the term caregiver to describe those who support people living with scleroderma. The term implies a medical role which doesn’t reflect the broad social, emotional, and practical support provided by partners, family, friends, and community members.

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