Authored by Charlie Lonardo VP, Digital Client Engagement
Rare disease innovation is accelerating. Mental health infrastructure is not keeping pace.
In recognition of Rare Disease Day, Konovo conducted new global research examining how physicians are addressing and struggling to address mental health burden in rare disease care.
Across the U.S. (n=200) and EU (n=100), physicians report that emotional distress is a frequent and disruptive reality for rare disease patients, yet screening and referral pathways remain inconsistent across specialties and regions.
In the U.S., 61% of clinicians say mental health challenges interfere with their rare disease patients’ daily lives. In the EU, that number rises to 74%.
Screening practices vary. While 81% of primary care and internal medicine physicians report routinely screening rare disease patients for mental health impact, engagement differs across some specialist groups, creating variability in how emotional burden is formally identified.
Even when distress is recognized, referral infrastructure remains strained. In the U.S., 63% of clinicians report difficulty finding mental health providers who understand rare disease challenges. In the EU, only a small minority describe referral pathways as easy.
These physician findings build on prior Rare Patient Voice research (n=958), where 82% of rare disease patients and caregivers reported experiencing frequent emotional distress that interferes with daily life. Together, clinician and patient perspectives reveal a coordinated challenge: emotional burden is pervasive, yet access to rare disease aware mental health support remains limited.
Mental health is not peripheral to rare disease care. It influences treatment adherence, caregiver sustainability, healthcare utilization, and clinical trial retention.
This global study serves as the inaugural Signal within Konovo Market Signals, our new on demand experience delivering real time market evidence for decisions in motion. Designed to move beyond one off reports, Konovo Market Signals provides life sciences leaders with timely, relevant healthcare intelligence grounded in both HCP and patient perspectives.
The full Global Physician Perspectives report explores cross specialty screening differences, U.S. vs. EU referral dynamics, resource gaps clinicians identify as most urgent, and the role stakeholders can play in strengthening mental health support.
Download the complete report on Konovo Market Signal to explore the full findings.
