We've recruited for Hereditary Angioedema, including the hardest population to reach: families of children with HAE.

Rare-disease recruitment built on advocacy and physician trust. We engage patients and families through the communities they already rely on, and support them all the way, even when a trial isn't the right fit.

Talk to our HAE teamSee how it works →
23
HAE advocacy groups
partnered with
72
Physicians activated across
18 states
200+
Patients & families engaged
through Leapcure campaigns
70%
Increase in awareness
across the pediatric HAE community

Understanding Hereditary Angioedema as a Clinical Trial Indication

Hereditary angioedema (HAE) is a rare genetic disorder that causes recurrent, unpredictable episodes of severe swelling in the hands and feet, face, abdomen, and, most dangerously, the airway, where an attack can be life-threatening. It is estimated to affect roughly 1 in 50,000 people, and because its symptoms mimic more common conditions, many patients go years, sometimes decades, before an accurate diagnosis. For a clinical trial, that means the eligible population is not only tiny but scattered, under-recognized, and often not yet identified as having HAE at all.

HAE is hereditary and autosomal dominant. It runs in families, and a parent with HAE has roughly a 50% chance of passing it to each child. That changes the recruitment problem in two ways. Affected patients cluster in families and in a small number of allergy and immunology practices rather than in the general population, so broad digital advertising alone reaches almost no one who qualifies. And participation is frequently a family decision, especially in pediatric HAE, where a parent or caregiver is the one weighing the trial.

Generic recruitment campaigns do not solve this. HAE patients and families come to research through the advocacy organizations, specialist physicians, and peer communities they already trust, or they do not come at all. In a completed HAE program, Leapcure engaged more than 200 patients and families, partnered with 23 advocacy groups, and activated 72 physicians across 18 states, driving a 70% increase in awareness across the pediatric HAE community.

The Challenge

HAE recruitment demands more than reach. It demands the relationships and the patience a rare hereditary disease requires.

An ultra-rare, dispersed population can't be found by broad campaigns

HAE affects an estimated 1 in 50,000 people, scattered across the country and concentrated in a small number of allergy and immunology practices. There is no list to buy and no audience large enough for broad digital advertising to work. The eligible patients are too few and too dispersed. Reaching them takes relationship-based access to the advocacy communities and specialist networks where HAE patients are actually known.

In a completed HAE program, Leapcure engaged 200+ patients and families and activated 72 physicians across 18 states, reaching a population broad campaigns miss entirely.

HAE is hereditary, and the carriers who matter most often don't know they have it

Because HAE is passed down through families, the people a trial most needs to reach often include relatives who carry the condition but have never been diagnosed. Standard recruitment has no way to surface them. Finding HAE patients means working through families and the organizations they trust, and refining outreach to reach undiagnosed hereditary carriers, not just the already-diagnosed patient.

Leapcure refined outreach mid-campaign specifically to reach hereditary carriers, family members who didn't yet know they were at risk.

Years of misdiagnosis mean many eligible patients aren't identified as HAE at all

HAE symptoms mimic allergies, appendicitis, and other common conditions, so patients are frequently misdiagnosed for years before the correct diagnosis. That under-recognition shrinks the apparent eligible pool and means recruitment can't rely on existing patient lists alone. It has to build awareness and trust in the communities where these patients eventually land.

Leapcure's grassroots advocacy work drove a 70% increase in awareness across the pediatric HAE community, expanding the pool of families who recognize HAE and consider research.

HAE participation is a family decision, especially in pediatric HAE

For many HAE patients, and nearly all pediatric ones, the decision to join a trial involves parents, caregivers, and siblings, not just the patient. Recruitment that treats the patient as an isolated individual misses how these decisions are actually made, and burns trust in a tight-knit community that talks to itself. Families need high-touch, honest support, including when a trial turns out not to be the right fit.

Leapcure's Patient Success Team held 30+ in-depth conversations with parents of children with HAE and supported families through the process even when they didn't proceed, protecting long-term community trust.

Three Channels. One Rare-Disease Strategy for Your HAE Trial.

Every HAE study is different. Leapcure deploys the right mix of advocacy outreach, specialist physician networks, and precision digital, mapped to your protocol, your sites, your geographies, and the families you need to reach.

1

Activate the right advocacy, physician, and digital channels for your HAE protocol

Leapcure activates three recruitment channels for HAE: advocacy community outreach (23 partner organizations, anchored by groups like the US Hereditary Angioedema Association), localized physician and specialist networks (72 physicians across 18 states, the allergists and immunologists who actually manage HAE), and precision digital aimed at the people who decide (parents of children with HAE, with outreach refined to reach undiagnosed hereditary carriers). Channel mix is calibrated to the protocol, site locations, and patient eligibility of each program.

2

Engage and support families through pre-screening, caregiver-inclusive

Every patient and family is engaged by Leapcure's Patient Success Team before site referral. We assess protocol eligibility, explain what participation involves, and include parents, caregivers, and siblings where relevant, because HAE decisions are family decisions. Sites conduct the official screening; Leapcure ensures the patients and families who arrive are informed, prepared, and supported, even those who ultimately don't proceed.

3

Optimize in real time based on site engagement

Channel performance and site contact rates are tracked continuously. Advocacy, physician-network, and digital contributions are rebalanced based on referral quality, site capacity, and protocol progress, and messaging is refined mid-campaign, as it was when we expanded outreach to reach hereditary carriers in a completed HAE program.

A Completed HAE Recruitment Program: Reaching Families in an Ultra-Rare Disease.

Challenge Context

Indication

Hereditary Angioedema (HAE), including pediatric HAE

Sponsor

Leading Rare-Disease Sponsor, HAE program

Challenge

Ultra-rare, dispersed patient population (~1 in 50,000); high rates of years-long misdiagnosis; hereditary transmission, meaning key candidates are undiagnosed family carriers; participation decisions driven by parents and caregivers, especially in pediatric HAE.

Channels deployed

Grassroots advocacy network (23 partner organizations); localized physician and specialist outreach (72 physicians across 18 states); hyper-targeted digital campaigns (Facebook, Google) aimed at parents of children with HAE, with messaging refined mid-campaign to reach hereditary carriers; high-touch Patient Success Team support for families.

Results & Metrics

Patients & families engaged

200+ patients and families engaged across advocacy, physician, and digital channels.

In-depth family conversations

30+ in-depth conversations with parents of children with HAE, building trust in the clinical trial process.

Advocacy reach

Collaboration with 23 advocacy groups drove a 70% increase in awareness across the pediatric HAE community.

Physician network

72 physicians engaged across 18 states, contributing referrals and insights for long-term outreach.

Site outcome

2 families committed to proceeding to site. In an ultra-rare indication, this reflects a program built to establish awareness and community trust first; site conversion is the shared work that builds on that foundation.

Community trust

Leapcure supported families through the process even when they didn't qualify or chose not to proceed, building long-term trust in the research community that compounds across future programs.

Built for HAE. Active Before Your Trial Opens.

Leapcure reaches HAE patients and families through advocacy community outreach, specialist physician networks, and precision digital, with an optional fourth layer that helps your trial show up when patients and families search. The mix is calibrated to each trial's protocol, sites, and the families you need to reach.

HAE Advocacy Network (feature)

  • •23 active HAE advocacy partnerships, anchored by organizations such as the US Hereditary Angioedema Association (US HAEA).
  • •Content co-developed with advocacy partners so research reaches families as a trusted option, not an unsolicited pitch.
  • •Grassroots advocacy drove a 70% increase in awareness across the pediatric HAE community in a completed program.

Physician & Specialist Networks (FEATURED: HAE's strongest reach asset)

  • •72 physicians activated across 18 states, the allergists and immunologists who actually diagnose and manage HAE.
  • •Frame as identifying the specialty practices and clinics where rare HAE patients are known but rarely reached by national campaigns.
  • •Physician insights also help surface undiagnosed and hereditary-carrier candidates that advocacy and digital miss.

Precision Digital

  • •Hyper-targeted Facebook and Google campaigns built around the people who decide (parents of children with HAE) and refined mid-campaign to reach hereditary carriers.
  • •Targeted by geography, family/caregiver signals, and site proximity; mapped to site capacity so sites aren't overwhelmed.
  • •Digital is the supporting channel for HAE, not the primary one. In an ultra-rare disease, advocacy and physician networks drive the qualified reach; digital extends it.

AEO / AI-Search Visibility for Your Trial (optional)

  • •Patients and families increasingly ask ChatGPT, Perplexity, and Google's AI Overview questions like "are there clinical trials for hereditary angioedema?"
  • •AEO done honestly: we make your trial's information genuinely retrievable, published as crawlable, server-rendered HTML, factually rich with unique first-party detail, and present in the trusted sources AI engines actually draw from (advocacy-org pages, ClinicalTrials.gov, specialist communities).
  • •For an ultra-rare indication with lower search volume, this is a lighter-lift but compounding channel over the life of the study.

Living with HAE, or raising a child with HAE? A clinical trial may be an option.

If you or your child lives with hereditary angioedema, a clinical trial may offer access to investigational treatments not yet widely available. We know HAE is unpredictable, and that decisions about research often involve the whole family. Leapcure's team provides step-by-step support and includes parents, caregivers, and family members in the process wherever that helps, and we're here even if a trial turns out not to be the right fit.

See if an HAE trial may be right for you
Leapcure kangaroo mascot

Leapcure's HAE recruitment team has run patient recruitment for hereditary angioedema, engaging 200+ patients and families, partnering with 23 advocacy organizations, and activating 72 physicians across 18 states. We deploy advocacy, specialist physician networks, precision digital, and family-centered patient support adapted to your protocol, and we can mobilize within 48 hours of program launch.

Talk to our HAE team