Learning to Know the Truth About Rare Disease and Access
This week, the National Organization for Rare Disorders highlighted a growing challenge in rare disease access to care in the United States. Many people with rare conditions cannot reach clinicians with the expertise to treat them. Because specialized care is concentrated in a small number of centers, patients often travel long distances—sometimes across state lines—just to receive basic follow-up care.
Why Rare Disease Access Fails in Well-Functioning Systems
Telehealth has emerged as one of the most effective ways to close this gap. When used appropriately, it allows people with rare diseases to connect with specialists without the physical, financial, and emotional burden of travel. For this community, telehealth is not a luxury—it is a necessity.
Yet access to telehealth remains uneven. Policies vary by state and insurer. Licensure rules restrict cross-state care. Reimbursement structures often favor in-person visits even when virtual care would be clinically appropriate.
When Systems Work for Most—but Not All
The result is a paradox: healthcare systems that function well for the general population can still fail people whose needs fall outside the average. This tension—between population-level efficiency and individual lived need—is not accidental. It reflects how systems are designed.
This is where learning to know the truth begins.
A My28Days® Reflection Cycle
Days 1–7: Noticing the Gap
Notice how positive healthcare statistics can coexist with people who feel unseen or unreachable. Systems designed for scale often assume proximity, flexibility, and time—resources people with rare diseases may not have.
Days 8–14: Seeing the Pattern
Patterns emerge. Systems are optimized for the many, not the uncommon. Rules meant to control cost or standardize care can unintentionally block responsiveness.
Days 15–21: Holding the Paradox
Hold two truths at once: population-based systems can improve outcomes, and those same systems can fail people with rare conditions unless flexibility is built in.
Days 22–28: Returning to the Human Scale
Care works best when it stays close to people’s lives. Telehealth is one way to restore proximity when distance becomes a barrier.
You don’t have to solve this today.
In systems built for scale, simply noticing who is missed is enough.
See the full NORD Report Card:
My28Days.org is an educational and advocacy platform supported by the Mary Elizabeth Conover Foundation. For more information or to lend support, contact Office@ConoverFoundation.org
