Leading With Lived Experience: Why Rare Disease Leadership Starts With Patients

Health Union’s Authentic Rare Disease Leadership

Health Union’s approach to rare disease—from building online communities to executing high-impact campaigns—is focused on helping patients and caregivers through these fundamental issues. Lawhon’s insights from the DHC Rare Disease Innovation panel underscored these core principles:

1. Build Community Through Shared Lived Experience

In the rare disease space, community isn’t just about sharing a diagnosis, it’s about sharing universal challenges like the diagnostic journey, the financial strain—and the fight to be heard. From Lawhon:

“Reframe ‘community’ in rare disease—patients and caregivers living with a rare disease are never truly alone, because they share universal experiences: the diagnostic odyssey (as Kristine Saffrin, MBA, described), the fight to be heard, financial challenges, and the constant need to self-advocate. Connecting patients and caregivers through these shared life experiences provides immediate, essential support, regardless of specific diagnosis.”

2. Recognize and Amplify Patient Expertise

The marketing and research industry must approach the rare disease space with humility, recognizing that the most powerful voices are those of patients and caregivers themselves. Lawhon shared:

“Patients and caregivers are the experts—their authentic stories are the most powerful validator of the lived experience of rare conditions; we must approach our roles with humility and let them lead the way.”

3. Meet People Where They Are

Effective engagement requires a commitment to listening and adding value to existing conversations, or providing resources where they are needed most. This includes understanding the digital platforms patients are using and being willing to test and learn new approaches. Said Lawhon: 

“At Health Union, we’ve always based our online community model on meeting people where they are, understanding where they are from both a mental and physical state, and also in the world where they are engaging and what platforms are they using.”

Case Study: The Power of Authentic Influence

This patient-centric approach yields measurable results, particularly when engaging with a hard-to-reach rare disease community.

For one client, Health Union developed a Pharmaceutical Grade Influencer Marketing (PGIM) campaign. The objective was to drive high-quality survey completes within a small rare disease community that they were having difficulty reaching. The solution featured custom video content of patient leaders encouraging peers to engage.

The results demonstrated the overwhelming power of this authentic, peer-led strategy:

• 3X higher completed survey rate
• 5.3X higher CTR than Instagram benchmarks
• 14% more efficient cost per qualified survey completes

This award-winning campaign proved that when patients and caregivers are approached with empathy and respect—and when their own trusted leaders are empowered to speak—they will engage significantly more than with traditional marketing.

Leading with the Patient’s Voice

The common denominator in the rare disease experience is the need for support, information, and a sense of belonging. Lawhon summarized the approach with this leading question: “What is the problem that we’re solving for patients? Always approach it from this perspective.”