Leading With Lived Experience: Why Rare Disease Leadership Starts With Patients
Rare disease leadership doesn’t start in the boardroom - it starts with patients.
The path to a rare disease diagnosis and treatment is often one marked by isolation, uncertainty, and constant self-advocacy. For marketers, researchers, and patient advocates, truly leading in the rare disease space requires a foundational understanding of this unique lived experience and a commitment to placing the patient and caregiver at the very center of every strategy.
This is the core of Health Union’s leadership in the rare disease community – a philosophy championed by Health Union President and COO, Lauren Lawhon, who emphasizes that true innovation begins with listening to the patient voice.
The Unique Journey of the Rare Disease Patient
Individuals and families managing rare conditions navigate a reality distinct from those with more well-known conditions. Insights from Health Union’s Rare Disease In America study highlight the significant burden and the ways in which these patients and caregivers are forced to become “experts” in their own care.
Behaviors and Challenges:
- The Long Road to Diagnosis: Often, the journey to a diagnosis can be long and taxing, with 16% of rare disease patients and caregivers saying it took more than 5 years to receive a diagnosis after first seeking medical care. During this time, 41% report that their concerns were initially dismissed by healthcare professionals.
- Active, Empowered Learners: Patients and caregivers are highly engaged in seeking knowledge, with 61% actively seeking information about treatment options. However, less than half (44%) currently see a condition specialist.
- The Expertise of Necessity: The scarcity of expert knowledge forces patients and caregivers into the demanding role of continual advocacy. As Lawhon notes, “Patients and caregivers are the experts in their diseases and their conditions.” They are often forced into taking charge of their own care, including investigating new treatments, reading the latest research, and educating their own HCPs.
The Emotional Toll of Isolation:
Despite their active search for information, patients often express feeling misunderstood. Only 20% of patients and caregivers feel others understand life with a rare disease.
“It’s a very isolating experience for patients,” Lawhon explains, a sentiment equally true for the caregivers whose role she describes as intensive. This isolation fuels a search for connection, with 42% saying connecting with others in their disease community helps them feel less alone.
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 highlights three core principles for authentic leadership in this space:
- 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.
“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, 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.”
- 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 shares: “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.”
- 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.
“At Health Union, we’ve always based our online community model on meeting people where they are,” says Lawhon. “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 Patients 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.”
Discover how Health Union’s industry-leading DTC solutions can elevate your strategy at health-union.com/dtc-advertising.
