Report finds 15% of US households affected by rare disease

Patients and caregivers are increasingly turning to technology to access healthcare, and find answers and support.

Market research company SSRS, with support from caregiver support organization ARCHANGELS, with support from the Association on Aging in New York, released its report “Rare Disease in the U.S. 2025.” This study was conducted using SSRS’ Opinion Panel Omnibus. The study found that 15% of U.S. households are affected by rare disease or an undiagnosed illness.

The study focused on the caregiver aspect of rare disease patients, and therefore focused more around healthcare vs. therapeutic access. However, the report did note that 38% of respondents used an AI tool such as ChatGPT or Gemini to learn about a health condition or treatment options, compared with 21% of those not living in a rare disease household.

The report also noted of respondents that:

• 63% have, in the past year, seen a doctor or other health care provider, such as a specialist, online or via a telehealth appointment, compared with 45% of those not living in a rare disease household.

• 50% have, in the past year, gone online to find other people who might have health concerns similar to their own, compared with 37% of those not living in a rare disease household.

The study noted that rare disease patients and caregivers lives are characterized by extreme stress, often matched by their resourcefulness, and are turning to technology to find answers and support.

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SSRS@SSRS