The Future of Rare Disease Marketing is Patient-First and Privacy-Safe
At Swoop, the science of finding patients meets the art of understanding them.
Today, I want to talk about something that defines rare disease more than any clinical statistic ever could: the patient experience of searching for answers.
For rare disease patients, the journey to diagnosis and treatment is often long, isolating, and painful.
For the one in 10 Americans living with a rare disease, this means:
- Appointments with multiple specialists, often requiring hundreds to thousands of miles of travel
- Repeated misdiagnoses
- Limited approved treatment options
- A sense of exhaustion and isolation for patients and their families
Meanwhile, life-changing therapies are advancing faster than ever. But the way we find, reach, and support patients has not evolved at the same pace. Too often, healthcare marketing depends on broad, generic targeting and fragmented engagement that misses those who need help most— right when they need it.
Swoop is changing that.
We combine predictive intelligence, privacy-safe audience development, and authentic patient engagement to help rare disease brands reach patients earlier in their journey, without ever exposing or accessing personal or medical information.
Our Predictive Audiences identify individuals who show patterns consistent with a high likelihood of being undiagnosed or who may be struggling with adherence. That means brands can deliver meaningful education and support before avoidable setbacks occur and meet patients where they truly are.
Our HCP Pro Suite goes far beyond traditional NPI list targeting and PLD reporting. We use real-world clinical indicators, such as referral pathways, research involvement, social networks, publications, and treatment behavior, to understand which healthcare professionals genuinely shape care decisions and guide the diagnostic process.
And because rare disease success requires coordination, we synchronize our DTC and HCP strategies to ensure the patient and physician journeys advance together.
Beyond that, we enable brands to support patients where they already seek trustworthy guidance through Swoop Agents, our conversational AI and intelligent search tools, that transform brand.com into a personalized navigation experience. This makes it easier for patients to find critical resources such as financial support programs, clinical trial enrollment, and treatment information without having to fight through complexity alone.
The power of community and the patient voice
And perhaps most importantly, we support patients where they already turn when they feel isolated and overwhelmed: within real rare disease communities. In these spaces, patient voices lead the conversation.
Through our communities, patients and caregivers connect with people who truly understand what they’re going through — not in theory, but through lived experience. These communities become a lifeline. These safe spaces are a place to ask sensitive questions they may hesitate to ask clinicians, share daily challenges, explore treatment options, discuss mental health struggles, and celebrate moments of hope.
For many members, it is the first time they have felt seen, heard, and believed.
In these spaces, the Patient Forward perspective comes to life; unfiltered, unedited, and grounded in truth. It is where the real needs, fears, motivations, and decision drivers are expressed authentically, not through assumptions or small panels. Community members voluntarily share what matters most — their priorities, beliefs, and information needs. And brands gain the ability to listen and learn directly from the people they serve, in an environment built on trust and respect.
These communities do more than inform strategy. They move the patient forward, restore agency, build connections, and change lives.
The impact
I am proud to say with confidence that partnering with Swoop delivers outcomes that are meaningful and measurable for both patients and brands.
Together, we can drive:
- Earlier identification
- Reduced time to diagnosis
- Better adherence and access
- Genuine support that improves patient and caregiver lives
In rare disease, supporting patients isn’t just about finding them. It’s about understanding them, empowering them, and navigating the path forward together.
And that is what Swoop is here to do.
