The Eczema That Nobody Takes Seriously
Close to 31 million Americans have eczema. That’s roughly 10% of the population. Yet when most people think of eczema, they think of a minor rash—something temporary, something that goes away, something that isn’t serious.
They’re wrong.
“There are a lot of people who may just assume that eczema is mild. We say that we have a campaign called ‘More Than Just a Rash,’ that it’s just a rash that it’ll go away, that it’s a very temporary thing that doesn’t have lasting impacts,” explains Nora Eigenbrodt, Associate Director for Grassroots Advocacy at the National Eczema Association (NEA).
But the reality is far different for the millions living with severe eczema.
Nora talks about patients who experience sleepless nights because their itching won’t stop. Patients who have to spend hours in the bathtub because it’s the only place they get relief. Children on playgrounds being avoided by other kids who think eczema is contagious or don’t want to touch them.
The mental health impacts. The social isolation. The constant battle with insurance companies over access to treatment.
“It’s about amplifying that voice and sharing lived experiences is the best way that we have to help people understand who aren’t directly impacted,” Nora says.
This is the work of the National Eczema Association, and Nora is at the forefront of it.
Understanding the National Eczema Association
The NEA is a patient advocacy organization representing those 31 million Americans with eczema. But they’re not just focused on patients—they serve caregivers, researchers, and healthcare providers as well.
“We kind of tried to be the resource and the hub for people with eczema, for caregivers as well as for researchers and healthcare providers as well,” Nora explains.
The organization works to:
Raise awareness about the true burden of eczema
Improve access to care by dismantling hurdles to treatment
Fund research to advance eczema treatment options
Serve the whole journey, whether someone has mild eczema and just needs skincare recommendations, or has severe eczema and is navigating expensive new treatments and insurance barriers
In her role as Associate Director for Grassroots Advocacy, Nora works directly with patients and caregivers, helping them leverage their personal stories to create system-wide change, primarily at federal and state levels.
Defining Advocacy: Giving Individuals a Platform
When asked to define advocacy, Nora’s answer cuts to the heart of what advocacy really is:
“It’s taking an individual and giving them a platform.”
This is crucial. Advocacy isn’t about a professional advocate sharing their own story on behalf of patients. It’s about creating pathways for patients themselves to be heard—to have their voices amplified so they can create change at a scale larger than just their own individual struggle.
“It’s not about me going to the hill and telling my story as someone who works at NEA, but it’s about how can I find ways to be that sort of seat at the table for our patients and for our caregivers to help them be able to share their story, make their voice heard in a way that can have change that’s larger than just at the individual level,” she explains.
This reframing is powerful. Many people struggling with insurance issues or access to treatment feel like they’re fighting alone. But Nora helps them see that their individual struggle is often part of a larger systemic issue that could be solved through federal or state legislation—legislation that, if passed, wouldn’t just help them, but everyone in their situation.
The Ambassador Program: Three Tracks of Engagement
The NEA’s ambassador program, started in 2020, is uniquely structured with three tracks that work simultaneously:
Track 1: Advocacy
This is the traditional advocacy track—the ambassadors who will go to Capitol Hill, participate in virtual Hill Days, and provide testimony to lawmakers. These are the most invested, most active advocates.
Track 2: Community Engagement
Some ambassadors focus on community outreach—tabling at local fairs, working with school systems and school nurses, conducting educational activities in their communities. This work was already happening organically in communities; the NEA formalized it and provided resources and support.
Track 3: Research
This is the unique track. NEA hosts a monthly research journal club where ambassadors—some with medical or scientific backgrounds, many without—learn to read and analyze new eczema research, present it to the group, and discuss what it means.
“You have to become an expert overnight in whatever your illness is, whatever your condition is,” Nora notes. “You also have to become an expert in advocacy.”
By giving patients research literacy skills, the NEA empowers them to understand why research funding matters and to advocate more effectively for it.
The Rapidly Changing Eczema Research Landscape
Understanding the evolution of eczema treatment is key to understanding why advocacy and research funding are so critical.
Ten to fifteen years ago, eczema treatment options were extremely limited. Topical steroid creams and moisturizers were essentially the only options available.
Then, around 2017, the first biologic treatment for eczema was introduced. Since then, the field has exploded with new treatment options.
But with new treatments comes a new problem: utilization management and insurance barriers.
“That treatment might be the perfect one for you, but it might be too expensive or not covered by your insurance, or you might not be able to find a specialist that can get you in order to prescribe it,” Nora explains.
This is where advocacy becomes essential. Without patients and advocates advocating for better access policies, people won’t be able to access treatments that could dramatically improve their lives—even when those treatments exist.
Measuring Impact in Legislative Work: A Marathon, Not a Sprint
One of the most challenging aspects of advocacy work is measuring impact when legislative change takes years or even decades.
Nora points to a concrete example: the Peer Reviewed Medical Research Program (PRMRP), a Department of Defense program that provides high-impact research funding. Congress must approve a list of eligible conditions each year, but only conditions that are advocated for get included.
“It’s a totally one-to-one sort of, if you advocate for it, you have a chance. And if you don’t, in most cases researchers will miss out on that funding in your disease area,” Nora explains.
Through an educational campaign about the military service connection to eczema, NEA was successful in getting eczema on that list for FY 25 and FY 26. Now they’re measuring the impact not just by being on the list, but by whether they’re actually funding quality eczema research through that program.
But not all victories are that clean or measurable.
Congressional timelines are unpredictable. Bills have to be reintroduced. Progress can feel glacially slow. As Nora notes, “Congress is a marathon, not a sprint.”
This is why Nora redefines what “impact” means in advocacy work:
Building eczema champions on the Hill through consistent relationship-building with legislators and their staff
Deepening engagement with the organization itself—do advocates feel heard? Are they more empowered? Do they get involved in research or clinical trials?
Legislative persistence—recognizing that momentum carries forward, that relationships built this year matter in year five when a bill finally passes
“Reintroducing the same legislation and inching closer to passage every session can be a frustrating experience and can be something that feels harder to measure impact,” Nora acknowledges. “So I think it has to be on multiple levels.”
The Evolution of Digital Advocacy
When Nora started at NEA three years ago, there was an ambassadors program, but no formal digital grassroots advocacy platform. She built that out.
This was crucial because not everyone wants to or can go to Capitol Hill. Building an “engagement ladder” means meeting people where they are—digitally, locally, in whatever way they can participate.
“I wanted to make sure that we were building the base of that engagement ladder and meeting people where they are,” Nora explains.
Through monthly digital campaigns around policy priorities, NEA can:
Gauge what their community cares about
Send action alerts and track which ones perform best
Identify who in the digital advocacy space might be interested in stepping up to become an ambassador
Build digital touchpoints with legislators
This data also informs their ambassador program and helps ensure they’re focusing on what actually matters to their community.
Why Patient-Centered Research Matters
NEA takes seriously what it means to do patient-centered research. When they fund research or conduct surveys and studies, they actively involve patients and caregivers.
For example, NEA recently conducted a 2025 survey on access to prescription treatments for eczema patients—an update to a 2021 study. This data directly informs their policy priorities.
“When it comes to our advocacy program and our policy priorities, they’re absolutely informed and selected by what we hear from the community,” Nora says.
This isn’t about checking a “patient involvement” box. It’s about genuinely building research around what patients experience and need.
The Bigger Vision: Regional Hubs for Deeper Engagement
If resources were unlimited, Nora’s vision for NEA’s expansion is clear: regional and state hubs.
Currently, as a small team, their reach by necessity is limited. Virtual opportunities are accessible, but many ambassadors have expressed interest in in-person events and opportunities.
Regional hubs would allow NEA to:
Deepen engagement with ambassadors who want in-person community
Invest more in in-state and in-district advocacy
Build relationships with local and state legislative offices (increasingly important as the federal level gets busier)
Support state-level legislative efforts
“Building relationships with those offices I think can be strategically very important over time to getting things done,” Nora explains.
This is the work that will happen while waiting for federal bills to move through Congress—the foundation that eventually enables larger victories.
What Advocacy Means in the Eczema Space
For Nora and NEA, advocacy has become essential because eczema is so widely misunderstood.
It’s not “just a rash.” It’s a complex, sometimes severely disabling condition that affects millions of Americans. It impacts mental health, sleep, social interaction, work, school attendance, and quality of life.
The world needs to understand this. And patients need to know that their individual struggles—the sleepless nights, the insurance battles, the social isolation—are actually systemic issues that can be addressed through advocacy and policy change.
How to Get Involved
If you or someone you know has eczema, or if you’re a healthcare provider, researcher, or caregiver interested in supporting this work, NEA is actively recruiting ambassadors.
You can learn more at: ambassadors.nationaleczema.org
The NEA offers opportunities for:
Patients with eczema (mild or severe)
Caregivers of people with eczema
Healthcare providers and dermatologists
Anyone passionate about understanding and supporting the eczema community
What Nora Wants You to Know
If you have eczema, you’re not alone. Those 31 million Americans? They’re out there, experiencing what you’re experiencing. And there’s a community working to make sure your voice is heard—not just by other patients, but by legislators, by researchers, by healthcare providers.
Advocacy isn’t something that happens to you. It’s something you can be part of. Whether that’s sharing your story, going to Capitol Hill, reading research papers, or organizing community education efforts—there’s a place for your voice.
And if you’re someone without eczema, understand this: what seems like a minor rash to you is a serious, sometimes debilitating condition for millions of Americans. When you hear eczema advocacy, it’s not about a temporary rash going away. It’s about sleepless nights, about social isolation, about access to life-changing treatments, about allowing people to live full and healthy lives.
Persistence matters. Relationships matter. Small wins build toward bigger ones. And every individual voice amplified through advocacy creates change that reaches far beyond that one person.
To learn more about turning your own health journey into purpose and impact, get your copy of From Patient To Advocate, where you’ll find resources, stories, and practical guidance for advocates at every stage of their journey.
