WATERTOWN, Mass. — As Rare Disease Day 2026 approaches, new global data from healthcare intelligence firm Konovo point to a significant gap between the mental health needs of people living with rare diseases and the care they receive from healthcare professionals.
According to Konovo’s latest Market Signals study, combined with patient and caregiver data from its recently acquired Rare Patient Voice unit, 82 percent of rare disease patients report experiencing emotional distress on a regular basis. Despite that, nearly 40 percent of healthcare professionals in both the United States and major European markets say they do not conduct any mental health screening for rare disease patients.
The findings suggest that while emotional and psychological distress is widespread among this population, mental health is often not systematically addressed in clinical care.
“Mental health is essential to overall health, yet the new global HCP data provide real market evidence of significant gaps in addressing the mental health support needs of rare disease patients,” said Tal Rosenberg, CEO of Konovo.
Screening practices vary widely by specialty. In the United States, 81 percent of primary care, internal medicine, and family medicine clinicians report routinely screening rare disease patients for mental health concerns. However, screening rates are substantially lower among specialists, with 39 percent of neurologists, 47 percent of endocrinologists, and 55 percent of cardiologists saying they do not screen for mental health impact at all.
Most clinicians surveyed said they frequently observe mental health symptoms among rare disease patients. In the study, 63 percent of U.S. healthcare professionals and 74 percent of those in the EU5 countries reported that they often or very often see stress, sadness, or anxiety in rare disease patients that interferes with daily functioning.
Patient and caregiver data reinforce the scale of the problem. In a 2025 Rare Patient Voice survey of 958 U.S.-based respondents, 82.4 percent reported frequent emotional distress that affects daily life. Despite this, only 30 percent said they had accessed professional mental health services. Emotional strain was reported nearly equally by patients and caregivers, with 44.2 percent of patients and 38.3 percent of caregivers citing high levels of stress.
Clinicians also reported major barriers to mental health support. About two-thirds of healthcare professionals said finding appropriate mental health providers is difficult, with only 28 percent in the U.S. and 10 percent in the EU5 saying it is easy to refer patients to providers who understand rare diseases. Access to mental health professionals was cited as the most needed resource by 47 percent of clinicians in both regions.
When asked who should play the leading role in supporting mental health needs for rare disease patients, clinicians most frequently pointed to connecting patients with mental health resources and support services. Mental health professionals were ranked as the top recommended form of support by clinicians, while patients and caregivers most often cited family and friends as their primary source of emotional support.
Konovo said its acquisition of Rare Patient Voice earlier this month strengthens its ability to integrate patient and caregiver perspectives with clinician insights, using its AI-driven platform to generate timely and rigorous healthcare intelligence.
The Market Signals study included responses from 200 U.S.-based clinicians surveyed on February 11, 2026, and 100 clinicians across the EU5 countries surveyed between February 13 and 16, 2026.
