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The Nevada Rare Disease Needs Assessment is a statewide survey led by the Nevada Rare Disease Advisory Council (NV-RDAC) to understand the needs of Nevadans living with rare diseases, their families, and the healthcare professionals who care for them. Launched in 2024, it includes a Patient & Family Needs Assessment and a Healthcare Provider Needs Assessment. As of October 2026, nearly 600 patients and family members and nearly 200 healthcare providers have responded. The current collection period closes December 31, 2026.
Click here to take the survey!What Three Years of Listening Has Taught Us
A note from the Chair of the Nevada Rare Disease Advisory Council:
Recently, I had the honor of joining the Michigan Rare Disease Advisory Council to talk about something Nevada has spent the past several years building: our statewide Rare Disease Needs Assessment.
Michigan is developing its own needs assessment and invited me, as Chair of the Nevada Rare Disease Advisory Council, to share what we have learned. It was an honor to help another state as it begins this work. It was also an unexpected opportunity to reflect on our own journey.
When Nevada began its needs assessment, our goal seemed straightforward: ask people living with rare disease what they needed and use what we learned to guide the work of the Council. Now, three years later, I understand that process very differently.
The assessment isn’t simply a survey. It is a way of listening, and listening well takes time.
We Learned to Keep Asking
One of the things I shared with Michigan was how much our approach to outreach evolved.
We adapted Pennsylvania’s While You Wait campaign for Nevada. We used social media. We conducted in-studio interviews with local news stations. We worked with the Nevada Board of Medical Examiners to reach healthcare providers. We asked clinical teams to place flyers and QR codes directly in front of patients and families.
And something happened every time we made another push:
More people responded.
And that taught us not to assume that someone who hadn’t participated wasn’t interested.
People living with rare disease are managing appointments, medications, insurance, work, school, travel and family life. Healthcare professionals are managing demanding practices. Our survey may matter deeply to them and still not be the thing they can do the first time they see it.
That’s why we kept asking. And our community kept answering.
As we approach the end of this collection period, participation has grown to nearly 600 patients and family members and nearly 200 healthcare providers. Speaking of, our collection period remains open through December 31, 2026.
Who Answers Matters as Much as How Many
A large response count is encouraging, but eventually we learned to ask a different question:
Whose voices are represented and whose are still missing?
The organizations, clinics and partners that help distribute an assessment inevitably influence who sees it. That isn’t a reason not to use those networks—they’re essential. It is a reason to pay attention.
Are we hearing from adults as well as children and families? People in rural and frontier communities? People receiving care outside established specialty centers? People covered by different insurance programs? People who are still searching for a diagnosis?
Because the goal isn’t simply to accumulate responses. The goal is to understand the community we are trying to serve.
Listening to Both Sides of the Healthcare System
Nevada began by listening to patients and families. Later, we added a healthcare provider assessment.
That changed the work.
Sometimes patients and providers described remarkably similar problems from completely different perspectives.
Families told us they were carrying the burden of coordinating complex care. Providers told us they were struggling to coordinate that same care within a fragmented system. Families described the difficulty of transitioning from pediatric to adult care. Providers independently identified the absence of structured transition programs and adult rare disease expertise.
Those moments of convergence matter.
When two groups looking at the healthcare system from opposite sides independently identify the same barrier, we should pay attention.
Not Becoming Too Attached to Our First Answers
We published findings, then we kept collecting data, and later, we went back and tested our conclusions against a larger dataset.
Most of the major patterns held. Some became stronger. Some became more nuanced. And a few things changed.
That may be one of the healthiest lessons this work has taught us: The purpose of collecting data isn’t to prove what we already believe. It’s to understand something more accurately.
If new information changes the story, we should be willing to change what we say.
What People Wrote in the Text Box
Surveys naturally draw our attention toward numbers.
Percentages are easy to report. They allow us to compare groups, identify patterns and measure change. But some of the most valuable information Nevadans gave us wasn’t contained in a checkbox.
It was contained in a text box.
People told us what happened while they searched for a diagnosis. They described trying to find specialists. They explained what an insurance denial actually meant for their care. They told us what happened when a child aged out of pediatric medicine. And they described the financial, emotional and practical burden their families were carrying.
Sometimes a few sentences explained something that a percentage never could. For example, one parent described the absence of care coordination very simply:
“We do it all ourselves.”
That sentence tells us something a bar graph cannot. And, over time, we came to understand that numbers identify the pattern, and narratives explain the mechanism. Together they make the case.
Asking Creates an Obligation
When we ask someone to tell us about their diagnosis, their child, their finances, their insurance struggles, their mental health, their work, their family and the barriers they encounter trying to obtain healthcare, we are asking them for something significant.
Their responsibility ends when they press submit.
Ours doesn’t.
We have an obligation to understand what they told us. To report it accurately, be willing to change our conclusions when the evidence changes, and to use what we learn to inform the work of the Council.
We also have an obligation to go back to the community and tell them what happened because they took the time to participate.
I increasingly think about Nevada’s needs assessment as a cycle:
Ask. Listen. Analyze. Act. Report back. Ask again.
Nevada Is Still Listening
Sharing Nevada’s experience with Michigan recently was meaningful because it demonstrated something else about this work.
Every state will have different findings. Michigan does not need Nevada’s answers. But if something we learned can help another state ask a better question, reach another family, avoid one of our mistakes or move more quickly from listening to action, then the value of what Nevada’s rare disease community has built reaches beyond our state.
It was an honor to be invited to share what Nevada has learned, and I am grateful for the opportunity for state Rare Disease Advisory Councils to learn from one another.
And here at home, the work continues.
Our current data-collection period closes December 31, 2026.
If you are a Nevadan living with a rare disease, a parent or family member caring for someone with a rare disease, or a healthcare professional caring for rare disease patients, we still want to hear from you.
And if you have already participated, please help us reach someone who hasn’t.
Every additional voice helps us understand Nevada a little better. That’s because ultimately, the success of this work won’t be measured by how many surveys we collect. It will be measured by what Nevada does differently because people trusted us enough to tell us the truth about their experience.