Americans Are Ready: New Data Shows Strong Public Support for Rare and Undiagnosed Disease Research

The numbers are in — and they tell a powerful story about where Americans stand on one of medicine’s most overlooked challenges.

Today, new data was released that showed Americans’ support for people living with undiagnosed diseases, but revealed a significant awareness gap. We are committed to representing the too often overlooked undiagnosed community and worked to incorporate questions about rare and undiagnosed diseases into a state-wide Iowa poll. The findings are striking — and they carry an urgent message for policymakers, healthcare leaders, and advocates alike.

“This data confirms what the undiagnosed community has known for years — the need is real, the public is ready, and the time for action is now. UDNF will continue to champion the research investments and policies that give millions of Americans a fighting chance at a diagnosis and a path forward.”

— Danielle Carnival, Ph.D., CEO, Undiagnosed Diseases Network Foundation

80% of Americans Say Washington Should Act

The headline finding is clear: eight in ten Americans support the federal government providing research funding to better understand rare and undiagnosed diseases.

That level of support signals something important — when Americans understand what is at stake for the health of their neighbors, they want action.

The Awareness Gap Is Just as Significant

Greater than 60% of those polled were unaware that more than 25 million Americans are living with rare or undiagnosed diseases.

That is roughly 1 in 13 people in this country navigating a healthcare system that too often has no answers for them. Many will spend years — sometimes a decade or more — moving from specialist to specialist, undergoing test after test, without ever receiving a diagnosis that explains what is happening.

When we close that awareness gap, support follows. Our data shows that once people understand the scope of the problem, they want solutions.

Closer to Home: Iowa’s Hidden Health Crisis

The data also reveals the deeply personal nature of this issue at the state level.

More than 15% of Iowans report being personally impacted by an undiagnosed condition — either themselves or through a direct family member.

That means in virtually every Iowa neighborhood, school, and workplace, someone is on a diagnostic journey. This is not a distant crisis, it is happening in living rooms and doctors’ waiting rooms across the state, right now. And for most of those families, the hardest part is often the uncertainty and isolation.

What Stands in the Way? Patients and Families Identify the Barriers

This new poll asked respondents to identify the biggest obstacles facing people on a diagnostic journey. Three barriers rose to the top:

Lack of insurance coverage for certain medical tests- Many of the advanced genomic and diagnostic tests that can identify rare conditions are not covered by standard insurance plans, leaving families to choose between financial hardship and answers and often causing long delays while doctors and patients wait for referrals.

High costs of specialized medical testing- Even when tests are available, the out-of-pocket costs can be prohibitive — particularly for families already burdened by years of unproductive appointments and mounting medical bills.

Lack of specialists near their home- Geographic access remains one of the most persistent and underappreciated barriers. Rare disease specialists are too often concentrated in major academic medical centers, leaving patients in rural and medically underserved communities with few options and long distances to travel for care.

These are not intractable problems. They are solvable — with the right policy attention, research investment, and public will. And our data shows that the American public supports these steps!

What This Means — And What Comes Next

This polling data arrives at a critical moment. Federal research budgets are under scrutiny, healthcare policy is in flux, and the undiagnosed community is working harder than ever to ensure that the millions of Americans without a diagnosis are not left behind.

The message from the American public is unambiguous: fund the research, remove the barriers, and give families the answers they deserve.

At UDNF, we will continue to use data like this to advocate for federal investment and needed policy changes. We will keep amplifying the voices of patients and families who are living this reality every day. And we will not stop until every person on a diagnostic journey gets the answers and effective treatments they deserve. Together we can end the diagnostic odyssey.

You Can Be Part of the Solution

Whether you are a patient, a caregiver, a clinician, a policymaker, or simply someone who believes every person deserves a diagnosis — there is a role for you in this movement.

Share this data with your networks, your representatives, and your community

Donate to support UDNF’s research, advocacy, and patient navigation programs

Contact your elected officials and urge them to support federal funding for rare and undiagnosed disease research – specifically, ask for them to grow investment in the Undiagnosed Diseases Network and have your Congressmembers sign on to a resolution to recognize Undiagnosed Diseases Day in April.

Sign up to stay connected with UDNF’s latest news, research updates, and advocacy opportunities

Together, we can turn public support into policy change — and policy change into answers for the millions who are still waiting.

For more information about the Undiagnosed Diseases Network Foundation and our work, visit udnf.org or contact us at info@udnf.org.