The trend: Most rare disease patients feel unsupported while navigating their care, pushing them toward alternative health information sources, according to two recent surveys—one by Morning Consult and Pantherx Rare of rare disease patients, caregivers, and healthcare professionals; and another by M3 MI of patients across conditions. For context, a rare disease is one that affects fewer than 200,000 people.

What’s driving the trend: 90% of rare disease patients and caregivers report delays in care due to communication issues, per Pantherx Rare’s polling.

• 68% say they wait for updates or responses from doctors, pharmacies, or insurers.
• 61% think they waste time repeating the same information to multiple people.
• 60% specifically face lags in hearing back about insurance coverage or medication/treatment approvals.

Rare disease patients turn to alternative channels for information, driven by difficulties navigating traditional resources.

• Rare disease patients are 16% more likely than average patients to research treatment options themselves before consulting their doctor, per M3 MI's 2025 MARS Consumer Health Study.
• Rare disease patients are also more likely than average patients to value information from pharma brand websites (68% vs. 59%), online communities or support groups (67% vs. 58%), and social media influencers (52% vs. 43%), per M3 MI.

Why it matters: Around 95% of the ~10,000 distinct rare diseases lack an FDA-approved treatment, largely due to small patient populations that hinder clinical trials, limited scientific understanding, and financial challenges of drug development. This makes rare disease diagnosis and treatment journeys more complex than those for other conditions—often marked by patients needing to navigate multiple specialists while struggling to receive clear guidance.

Recommendations for healthcare and pharma marketers: Closing the information and support gap for rare disease patients requires a coordinated presence across both traditional and nontraditional channels where they seek answers and community.

Help patients understand where they can access treatment. Provide clear information on available and experimental treatment options, and share it through rare disease advocacy organizations, medical practices, hospitals, and pharmacies.

Develop educational messaging for the channels where people actively seek medical information. Tailor disease-specific content for search and social media, including guidance on how to access medical care and additional resources, such as support groups and online forums. When possible, incorporate video testimonials from patients with similar conditions, as well as their families, caregivers, or rare disease influencers.

Raise awareness of insurance navigation services. Pharma’s patient support programs are often underused. Drug brand websites should prominently highlight insurance coverage details and provide easy access to support via phone or online channels.

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