Rare Disease Is a Mental Health Burden on Patients and Caregivers that Healthcare Professionals May Not be Meeting, Reveals Latest Global Data from Konovo
While 82% of rare disease patients report experiencing emotional distress regularly, data show nearly 40% of both US and EU5-based HCPs do not screen for mental health impact; significant gaps exist among US specialties
WATERTOWN, MA February 25, 2026 —As Rare Disease Day 2026 approaches on February 28, a new Market Signals study by healthcare intelligence company Konovo, combined with data from its newly acquired Rare Patient Voice (RPV) unit, reveals a critical gap in care. Although 82% of patients with rare diseases face profound mental health challenges, nearly 40% of healthcare professionals (HCPs) in both the United States and the EU5 countries report that they do not conduct any mental health screening for these patients.
In addition, while 81% of US primary care physicians (PCPs), internal medicine and family medicine clinicians routinely screen for mental health concerns among rare disease patients, some specialists screen at significantly lower levels – with 39% of neurologists, 47% of endocrinologists, and 55% of cardiologists in the study reporting 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 mental health impact of rare diseases on patients and family members providing care is profound and pervasive, given rare diseases affect an estimated 300 million people globally, according to Rare Diseases International. Most HCPs in Konovo’s US and EU5 study – 63% in the US, 74% in EU5 nations – say they often or very often observe stress, sadness, and/or anxiety in rare disease patients that impacts daily functioning.
Konovo’s HCP insights corroborate US rare disease patient and caregiver data sourced by Rare Patient Voice in a 2025 survey of N=958 – where 82.4% respondents reported experiencing frequent emotional distress that interferes with their daily lives. Despite such a high percentage affected, only 30% reported accessing professional mental health services for treatment. Patients and caregivers appear to share the emotional burden nearly equally, with high emotional stress reported by 44.2% of patients and 38.3% of caregivers.
Data also show that
- Two thirds of HCPs (71% US, 67% EU5) say that finding appropriate mental health providers is an issue that they call very difficult or somewhat difficult. Only 28% in the US and 10% in the EU5 say that it’s easy finding referrals to providers that understand rare diseases.
- Access to mental health professionals tops the list (47% in both cohorts) of resources that HCPs wish were more readily available. Support groups (28% in US, 12% in EU5); reduced waiting times, better insurance coverage, and financial assistance (19% in US, 20% in EU5), and rare disease-trained professionals (18% in US, 13% EU5) are deemed less readily available than HCPs prefer.
- Pharmaceutical companies, HCP, and patient advocates’ #1 role in supporting rare patient mental health needs should be in connecting them to mental health resources and support, according to 45% of HCPs in the US, and 30% in the EU5. Facilitating connections and community (20% in US, 16% in EU5) also ranked highly.
- Both US and EU5-based HCPs rank mental health professionals as their top recommended support (30% in US, 35% in EU5), while 69% of patients and caregivers cite family and friends as the top support mechanism. Patient advocacy organizations (23% in US, 19% in EU5) and online and in-person support groups (21% in US, 19% in EU5) are the second and third most frequently cited mental health supports.
Konovo’s acquisition of Rare Patient Voice in early February 2026 expands its ability to integrate patient and caregiver perspectives alongside healthcare provider insights – applying Konovo’s AI-native platform infrastructure and its automation and human expertise to accelerate insight generation while maintaining rigor and quality.
Konovo’s Market Signals report on The Mental Health Burden of Rare Disease: Physician Perspectives includes n=200 US clinicians who responded on February 11, 2026, and n=100 EU5-based clinicians responding between February 13-16, 2026.
For more information please download the Konovo Market Signals report on Rare Disease or Rare Patient Voice Patient Study White Paper – or scan the lineup of Konovo Market Signals insights at www.konovo.com.
About Konovo
Konovo is a global healthcare company on a mission to transform research through technology and connected insights. Konovo simplifies the research process, connects fragmented insights, and enhances access to healthcare audiences including physicians, patients, caregivers, and allied healthcare professionals through its intelligent platform and expert-guided solutions. Operating across the Americas, Europe, and Asia, Konovo supports market research agencies, consultancies, and life science and healthcare brands with deeper, actionable insights.
About Rare Patient Voice
Rare Patient Voice empowers patients and family caregivers to have their voices heard through participation in research including market research, health economics outcomes and real-world evidence, user experience/human factors studies, and clinical trials. The RPV community includes over 200,000 patients and caregivers across more than 1,500 diseases, both rare and non-rare, in nine countries. By fostering trusted relationships and delivering high-quality insights, RPV enables research that reflects real-world patient experiences.
Contacts:
Mary Kae Marinac
PR Representative for Konovo
mk@mkmarinac.com
Laura Mullen
Director of Marketing and Communications, Rare Patient Voice
laura.mullen@rarepatientvoice.com
