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Rare disease patients often face a long, complex path before treatment begins. Diagnosis may take years, and even after an approved therapy is available, patients and caregivers can encounter new barriers, including education gaps, missing documentation, prior authorization requirements, transportation challenges, and uncertainty about what to expect.
At the Access USA Rare Disease Summit in March 2026, industry leaders discussed these challenges during the panel titled “Designing the Ultimate Rare Patient Journey – Integrating Data, Services, and High-Touch Patient Support.”
Jody Thompson, Senior Vice President at Soleo Health and leader of its rare disease division, emphasized that rare disease journey planning must begin earlier and be designed around the full patient experience.
A rare disease patient journey is not a straight line. Thompson highlighted several points where patients may drop off, even after overcoming significant barriers to diagnosis and treatment selection.
One of Thompson’s key points was the need for a “paradigm shift” in rare disease launch planning. Thompson noted that access, channel, and specialty pharmacy strategy should be part of launch planning from the start. In the rare disease journey, patients may drop off at many points — from diagnosis to treatment initiation to ongoing adherence. Identifying those points early can help manufacturers and partners design programs that reduce delays and support continuity of care.
Another major theme from Thompson’s remarks was the connection between data and channel strategy. The way a manufacturer structures its distribution and support model affects the quality, consistency, and actionability of the data it receives.
A broader channel strategy may create more sources of information, but it can also require additional resources to clean, reconcile, and interpret data. A more focused strategy may support cleaner and more consistent insights.
Specialty pharmacy teams interact directly with patients and providers during moments that reveal meaningful insight: confusion about diagnosis, difficulty reaching the patient, missing documentation, uncertainty about infusion logistics, transportation needs, or hesitation after hearing about potential side effects.
When captured and shared appropriately, those insights can help manufacturers and partners refine interventions and reduce abandonment.
The panel also explored adherence, especially after patients have started therapy. Thompson shared that discontinuation can occur for reasons that may not be obvious from claims or basic program data alone.
This kind of intervention depends on trust. It also depends on partners who have the time, clinical expertise, and patient relationships to listen beyond a refill reminder or transactional check-in.
As Thompson noted during the discussion, patients and caregivers often need someone who can simply ask, “How are you doing?” and be ready to listen.
Thompson also addressed the role of compliance and privacy in rare disease support. Laws and regulations exist to protect patients, and each organization must operate within the rules that apply to it. At the same time, different partners may support the patient journey in ways that comply with regulations.
For example, a manufacturer may face limits on patient outreach without consent, while a specialty pharmacy receiving a referral may be able to continue outreach to help activate the patient and support therapy initiation.
Similarly, specialty pharmacy partners may have relationships with prescribers that enable them to operationalize updates to orders or care processes to support adherence and reduce avoidable treatment disruptions.
The broader point is not that one organization can solve every challenge. It is that rare disease support works best when each partner understands its role, aligns on shared goals, and complements the work of others across the journey.
A successful rare disease patient journey requires more than a therapy, a hub, a pharmacy, or an independent field team. It requires early planning, coordinated execution, actionable data, provider support, patient education, and ongoing human connection.
SoleoRare, Soleo Health’s rare disease specialty pharmacy, is designed around this type of coordinated approach, with infrastructure to accelerate therapy initiation, streamline care coordination, and support the patient journey through measurable outcomes.
For rare disease patients, the journey is rarely simple. By integrating data, access support, provider coordination, and specialized services, stakeholders can create a more connected experience.