ISPOR 2026: Hereditary Angioedema Patient Burden – Social Media Analysis

Hereditary Angioedema patient burden remains a significant challenge for those living with this rare, unpredictable condition, even as new treatments emerge. At MadeAi, we specialize in turning real-world patient conversations into actionable intelligence. Our latest social media listening analysis, presented at ISPOR USA 2026, reveals how HAE continues to affect daily lives while highlighting opportunities for life sciences companies to bridge gaps through patient insights services.

CSL Behring and MadeAi conducted the research. They used advanced healthcare social listening services to extract genuine, unfiltered patient insights. This study shows how patient insights services help life sciences companies remain competitive while becoming more customer-centric.

Understanding the Persistent Realities of Hereditary Angioedema

Imagine waking up not knowing if today will bring a painful swelling attack that could sideline you for hours or days. For people with Hereditary Angioedema (HAE), this uncertainty is part of life. HAE is a rare inherited disorder causing recurrent, often severe angioedema attacks that swell subcutaneous and submucosal tissues. These episodes can be painful, disfiguring, and even life-threatening when they affect the airways.

But the burden extends far beyond the physical attacks. Patients frequently report anxiety, depression, missed work or school, and strained social connections. Traditional clinical trials capture some of this, yet they often miss the unfiltered, day-to-day experiences shared openly on social platforms. This is where healthcare social listening services make a difference—by amplifying patient voices that might otherwise go unheard.

Insights from Social Listening and the Approach

This study leveraged an AI platform for Life Sciences to systematically analyze 3,069 posts, filtering for relevance and extracting themes using subject matter expert validation.

Form Patient Voices to Validated HAE Insights

Methodology: To better understand the real-world experiences of people living with HAE, we analyzed publicly available conversations from social media platforms and patient communities. Using a predefined set of HAE-related keywords, relevant discussions were identified, anonymized, and reviewed for relevance.

The team excluded posts unrelated to HAE or lacking sufficient context. The remaining conversations were categorized into key themes such as disease burden, treatment experiences, diagnostic challenges, triggers, and unmet needs. Subject matter experts validated the tagging and interpretation of the data, which was then analyzed to uncover recurring themes, emerging trends, and shifts in patient experiences over time.

The analysis compares patient discussions from 2018–2023 and 2023–2025, providing insights into how patient needs and challenges have evolved.

Key Findings: Disease Burden and Unmet Needs Persist

The results paint a clear picture. Of the relevant posts, 79% (1,201) discussed patient burden, with disease-related issues dominating at 87%. Patients spoke vividly about persistent swelling, painful attacks, and frequent episodes disrupting daily life.

Diagnostic Gaps Are Getting Wider

One of the more concerning findings: diagnostic unmet needs increased from 26% (2018-2023) to 37% (2023-2025). Patients still struggle with delayed diagnosis, misdiagnosis, and navigating the healthcare system to confirm their condition. This represents a critical failure point in the patient journey, and an opportunity for companies to build better diagnostic support and awareness initiatives.

The implications are significant; that is, if patients are still battling to get diagnosed, no amount of innovation in treatment will reach them quickly enough.

What’s Actually Improving?

However, not all trends are negative. Injection-related burden declined from 12% (2018-2023) to 3% (2023-2025), reflecting successful advances in prophylactic treatments requiring fewer injections. Career-related burden also decreased from 6% to 4%, suggesting some patients experience improved work functionality.

Even so, these improvements are offset by increases in disease burden (61% to 87%), diagnostic gaps (26% to 37%), and educational needs (46% to 50%). The pattern suggests treatments address specific symptoms but fail to resolve the broader patient experience—a crucial insight for AI in life science strategy.

Here’s a quick comparison table of key themes:

Data derived from comparative social media listening analysis. Note platform shifts (e.g., more Facebook activity recently) influence interpretation.

These shifts underscore a critical point: While therapeutic innovations have advanced, the real-world patient experience hasn’t fully caught up. This gap represents both a challenge and an opportunity for companies leveraging an AI platform for life sciences to monitor and respond faster.

The Business Case for Patient-Centric Research

Overall, this research demonstrates why companies investing in an AI platform for life sciences patient intelligence tools gain a competitive advantage. You learn what matters most to your customers. Organizations can identify educational gaps before they become market risks. They can spot emerging unmet needs early, informing R&D and commercial strategy.

For rare disease companies, especially, where patient populations are small, and insights are precious, social listening becomes essential infrastructure. It’s the difference between guessing about patient needs and knowing them with certainty.

AI-Driven Workflow for Patient Insight Generation 

At MadeAi, our AI platform for life sciences combines natural language processing, expert validation, and qualitative-quantitative analysis to deliver these insights reliably and compliantly. By partnering with clients like CSL Behring, we’ve helped translate patient voices into strategies that improve outcomes and experiences. This analysis, for instance, highlights where educational resources or access improvements could make an immediate difference.

Transitioning from raw conversations to strategic decisions requires robust technology. Our methods adopt iterative searching, anonymized screening, structured coding, and SME review that ensure high-quality, ethical insights that drive meaningful change in rare disease management.

Why This Matters Now

Nearly two years after the initial study, disease burden and key gaps haven’t eased as hoped. This persistence, despite treatment advances, calls for continued vigilance and innovation. Companies that invest in healthcare social listening services position themselves to lead—not just in drug development, but in truly patient-centric care.

As HAE communities grow more vocal online, listening tools become indispensable. They bridge the divide between clinical innovation and lived reality, ultimately helping reduce the Hereditary Angioedema patient burden.

Author’s Note: This article was supported by AI-based research and writing, with Claude 4.5 assisting in the creation of text and images.