As Rare Disease Day 2026 approaches, new global data from healthcare intelligence company Konovo highlight a stark disconnect: while emotional distress is widespread among rare disease patients and caregivers, mental health screening remains inconsistent across clinical settings.
According to Konovo’s Market Signals study, 82% of rare disease patients report experiencing regular emotional distress. Yet nearly 40% of healthcare professionals (HCPs) in both the US and EU5 countries say they do not conduct any mental health screening for this population.
Screening rates vary significantly by specialty. While 81% of US primary care physicians, internal medicine, and family medicine clinicians report routinely screening for mental health concerns, notable gaps emerge among specialists. In the study, 39% of neurologists, 47% of endocrinologists, and 55% of cardiologists reported that they do not screen for mental health impact at all.
“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. “By leveraging our AI-native technology platform, Konovo delivers timely, relevant insights from HCPs and patients, empowering healthcare and life sciences leaders to make high-stakes decisions that accelerate the pathway to health.”
The findings are reinforced by a 2025 Rare Patient Voice survey of 958 US patients and caregivers. Among respondents, 82.4% reported frequent emotional distress that interferes with daily life, yet only 30% had accessed professional mental health services. Emotional strain was shared across groups, with 44.2% of patients and 38.3% of caregivers reporting high stress levels.
Barriers to care remain substantial. Two-thirds of HCPs say finding appropriate mental health providers is somewhat or very difficult, and only 28% in the US and 10% in the EU5 report that referrals to professionals who understand rare diseases are easy to secure. Nearly half of clinicians cite access to mental health professionals as the resource they most wish were more readily available.
With an estimated 300 million people worldwide living with rare diseases, the data underscore a clear message: integrating mental health support into rare disease care pathways is no longer optional—it is essential.
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