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Rare Disease Studies

Connecting Patient, Caregiver, and HCP Perspectives

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Patients/Caregivers
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Healthcare Providers
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Rare/Hard-to-Diagnose Conditions
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Valued Information Sources
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Barriers to Diagnosis or Treatment
Introducing 2 New Syndicated Studies

Understand the rare disease journey from patient and caregiver experiences to HCP diagnosis and treatment decisions.

Patients & Caregivers

Study

Insights into diagnosis delays, treatment barriers, information needs, caregiver involvement, media behaviors, and AI adoption.

Healthcare Providers

Study

Insights into diagnostic challenges, clinical decision-making, information sources, prescribing influences, and patient engagement.

Connect the journey

Identify where patient needs, caregiver support, and HCP decision-making align to improve education, engagement, and treatment adoption.

Rare Disease Resources

Rare Disease Content Directory

(Coming soon!)

Learn more via each study's detailed overview:

HCP Rare Disease

Patients & Caregivers Rare Disease

Release: September 2026

Rare Diseases Require A Different Approach

Rare disease patients often face prolonged diagnostic journeys, limited information, treatment barriers, and fragmented care experiences. On the other hand, HCPs face challenges identifying and managing conditions with limited clinical experience and evolving treatment options. M3 MI helps brands and healthcare organizations understand both perspectives to make more informed commercial and engagement decisions.

With these studies, healthcare marketers will be uniquely positioned to:

  • Build precise patient, caregiver and HCP segments
  • Map patients' rare disease care journey and optimize journey‑based engagement
  • Activate effective communication and engagement for patients/caregivers
  • Accelerate diagnosis & treatment initiation
  • Connect HCP and DTC data for meaningful impact

Product Strengths

Connect Patients, Caregivers, and HCPs

The power of rare disease strategy lies in understanding where patient needs and HCP decision-making intersect

Our coordinated rare disease studies provide a unified view of:

  • Information needs
  • Diagnosis challenges
  • Treatment decisions
  • Communication preferences
  • Digital and AI influences
  • Barriers to care

Understand theComplete Rare Disease Journey

Go beyond diagnosis rates and treatment usage

Patient, Caregiver, & HCP Journey Insights:

  • Diagnostic journey and delays
  • Treatment initiation and adherence barriers
  • Caregiver involvement and influence
  • Financial and access challenges
  • Evolving information needs at each stage of the journey

Capture theFuture of Healthcare Information-Seeking

Rare disease communities are often early adopters of digital resources

Explore evolving media behaviors:

  • Online health information behaviors
  • Social media and community engagement
  • Video and digital content consumption
  • Healthcare advertising impact
  • AI-powered information seeking
  • HCP adoption and perceptions of AI

Broad Rare Disease Coverage

Contact us for specific details

To provide reportable, scalable insights while maintaining disease-level relevance, we measured 90+ conditions grouped across the following 8 therapeutic area clusters:

  • Autoimmune and immune disorders
  • Blood disorders
  • Cardiac conditions
  • Growth disorders
  • Infectious diseases
  • Metabolic diseases
  • Neurology
  • Oncology
Accessing the Data

Rare Disease data will be available to clients via multiple platforms and formats for maximum convenience and utility

  • Online crosstabulation software via Telmar
  • A dashboard for each study – interactive data visualization tools for quick views and exporting to PowerPoint
Access Tools & Portals