Pre-Conference Patient Survey – CONNECTED 2025

Ahead of the CONNECTED 2025 Global Virtual Conference, the TED Community Organization surveyed people living with Thyroid Eye Disease (TED) and often Graves’ disease, along with a smaller group of care partners.

The survey explored:

• Who respondents are and where they live
• Their experience with TED and Graves’
• Use of TED Community resources
• Symptom burden and disease course
• Care pathways and provider types
• Hopes for CONNECTED 2025
• What “NED – No Evidence of Disease” means to them
• Priorities for a TED Quality of Life (QoL) Program
• Graves’ support needs
• Willingness to share their story
• What they wish their doctors understood

The full dataset now includes dozens of responses from multiple countries and U.S. states, giving a robust view of the lived experience of TED.

What TED to NED Means to Patients Living with Thyroid Eye Disease

During CONNECTED 2025, participants reflected on what **NED—No Evidence of Disease—**means for them personally. Responses revealed a deeply human portrait of hope, longing, resilience, and the very real physical and emotional burdens carried by people with TED.

Most respondents described NED not as a single medical milestone, but as a return to freedom—freedom from double vision, pain, disfigurement, fear, uncertainty, and barriers to daily life. For many, NED is also a reclamation of identity, confidence, and independence.

Six major themes emerged.

What Patients Want Their Doctors to Understand About Living With TED**

The TED patient write-in responses reveal a powerful and consistent message: patients with Thyroid Eye Disease want to feel seen, believed, and fully understood as whole people—not just as clinical cases. Their comments underscore gaps in emotional support, communication, and the day-to-day realities of navigating TED.

Across all responses, five core themes emerged.