For many families, the search for a rare disease diagnosis doesn’t end with one doctor’s visit — it becomes a years-long journey of appointments, referrals, tests, and waiting rooms. Researchers call this the “diagnostic odyssey”: the stretch between a parent first raising a concern and finally getting a name for what’s happening. On average, that stretch lasts four to six years and involves seven or more specialists.

For Latino families, the road is often longer still. 

Language and screening gaps. Developmental screening tools translated into Spanish aren’t always validated for accuracy, which can lead providers to miss or misjudge early warning signs. 

Slower referral response. Hispanic families who raise concerns with a provider tend to wait months longer than white families for a follow-up response, let alone a specialist referral. 

Coverage and access gaps. Latino children in immigrant households are more likely to be uninsured and more likely to live far from the specialists who diagnose rare and developmental conditions. 

None of these barriers exist alone — a family managing a language gap is often also managing a coverage gap and a three-hour drive, all at once.

When the Search Becomes a Second Job

Every appointment is also a trip: time off work, childcare rearranged, gas money spent, often a full day lost to a 30-minute visit. Nationally, six in ten caregivers who miss a full workday for a child’s care need lose pay outright, with no cushion to fall back on. For Latino households, caregiving-related expenses eat up an estimated 47% of annual income — nearly double the overall caregiver average, and higher still for Latina caregivers — layered on top of the material hardship more than six in ten Hispanic children’s households already report. The diagnostic odyssey isn’t just a medical burden. It’s a financial one.

We Want to Hear From You

Most of what’s known about the diagnostic odyssey comes from clinical records — tests ordered, specialists seen, dollars billed. Far less comes directly from the caregivers living it: rearranging shift work around a specialist three hours away, or choosing between a diagnostic appointment and a paycheck.

OLHA is partnering with GeneDx to change that. We’re inviting Latino caregivers to share what the diagnostic search has actually cost you — in time, income, and stability — through a short survey, available in English and Spanish:

👉 Share your story

Your experience will directly shape what we bring to policymakers at the state and federal level — pushing for culturally and linguistically matched patient navigators, coordinated referral centers, and expanded Spanish-language telehealth, so families spend less time searching and more time getting care.

This effort only works with your voice in it. If you’ve lived the diagnostic odyssey with a child or loved one, we want to hear from you — and we’ll carry your story to the people who can change the system.

👉 bit.ly/OLHArare26

(Disponible en inglés y español / Available in English and Spanish)

The Toll on Family Caregivers of Children with a Rare Disease was first published by the Organization for Latino Health Policy and is republished with permission.