Hereditary angioedema

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ORPHA:91378OMIM:619366
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Show terms as
12FDA treatments27Active trials44Specialists8Treatment centers15Financial resources

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Hereditary Angioedema is treated with 1 medication in our database, including Takhzyro. 1 of these has manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Takeda. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Hereditary Angioedema treatment below.

Also known as:

Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Childhood to adulthood

Can begin any time from childhood through adulthood

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

10 events
Jul 2026Donidalorsen Treatment in Children With Hereditary Angioedema

Ionis Pharmaceuticals, Inc. — PHASE3

TrialRECRUITING
May 2026A Study of Takhzyro in Teenagers and Adults With Hereditary Angioedema (HAE) in South Korea

Takeda

TrialNOT YET RECRUITING
May 2026A Study About the Diagnosis and Management of Hereditary Angioedema (HAE) in Egypt

Takeda

TrialNOT YET RECRUITING
Apr 2026A Study of Lanadelumab in Teenagers and Adults With Hereditary Angioedema (HAE) in the Kingdom of Saudi Arabia

Takeda

TrialNOT YET RECRUITING
Apr 2026A Study to Learn About the C1-Inhibitor Function as Diagnosis for Hereditary Angioedema

Takeda — NA

TrialNOT YET RECRUITING
Apr 2026Phase 3 Extension Study of ADX-324 in Participants With Hereditary Angioedema (HAE)

ADARx Pharmaceuticals, Inc. — PHASE3

TrialNOT YET RECRUITING
Apr 2026Bleeding Reduction in Grade II-III Haemorrhoids Through Embolization Treatment

Cardiovascular and Interventional Radiological Society of Europe

TrialNOT YET RECRUITING
Feb 2026A Study of Lanadelumab in Children With Hereditary Angioedema (HAE) in Multiple Countries

Takeda — NA

TrialRECRUITING
Oct 2025Study of Oral Deucrictibant XR Tablet for Prophylaxis and Deucrictibant IR Capsule for On-Demand Treatment of Angioedema Attacks in Adults With Acquired Angioedema Due to C1 Inhibitor Deficiency

Pharvaris Netherlands B.V. — PHASE3

TrialRECRUITING
Oct 2025A Long-Term Study of Navenibart in Participants With Hereditary Angioedema

Astria Therapeutics, Inc. — PHASE3

TrialENROLLING BY INVITATION

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

12 available

SAJAZIR

ICATIBANT· Cycle Pharmaceuticals Ltd-Uk

indicated for the treatment of acute attacks of hereditary angioedema (HAE) in adults 18 years of age and older

EKTERLY

SEBETRALSTAT· KalVista Pharmaceuticals Ltd

indicated for the treatment of acute attacks of hereditary angioedema (HAE) in adult and pediatric patients aged 12 years and older

Ruconest

C1 ESTERASE INHIBITOR RECOMBINANT· Pharming Healthcare Inc.

indicated for the treatment of acute attacks in adult and adolescent patients with hereditary angioedema (HAE)

Kalbitor

ECALLANTIDE· Takeda Pharmaceuticals America, Inc.■ Boxed Warning

indicated for treatment of acute attacks of hereditary angioedema (HAE) in patients 12 years of age and older

Haegarda

C1 esterase inhibitor subcutaneous (human)· CSL Behring LLC

For routine prophylaxis to prevent Hereditary Angioedema (HAE) attacks in adolescent and adult patients

ANDEMBRY

GARADACIMAB· CSL

ANDEMBRY is indicated for prophylaxis to prevent attacks of hereditary angioedema (HAE) in adult and pediatric patients aged 12 years and older.

Orladeyo

berotralstat· BioCryst Pharmaceuticals, Inc.

ORLADEYO is indicated for prophylaxis to prevent attacks of hereditary angioedema (HAE) in adults and pediatric patients 2 years of age and older.

TAKHZYRO

LANADELUMAB-FLYO· Takeda Pharmaceuticals America, Inc.

indicated for prophylaxis to prevent attacks of hereditary angioedema (HAE) in adult and pediatric patients aged 2 years and older

Orladeyo

BEROTRALSTAT HYDROCHLORIDE· BioCryst Pharmaceuticals, Inc.

ORLADEYO is indicated for prophylaxis to prevent attacks of hereditary angioedema (HAE) in adults and pediatric patients 2 years of age and older.

DAWNZERA

DONIDALORSEN· Ionis Pharmaceuticals Inc.

indicated for prophylaxis to prevent attacks of hereditary angioedema (HAE) in adult and pediatric patients 12 years of age and older

Danazol

DANAZOL· Chartwell RX, LLC.■ Boxed Warning

Danazol capsules are indicated for the prevention of attacks of angioedema of all types (cutaneous, abdominal, laryngeal) in males and females

ICATIBANT

ICATIBANT ACETATE· Bryant Ranch Prepack

indicated for the treatment of acute attacks of hereditary angioedema (HAE) in adults 18 years of age and older

Clinical Trials

20 recruitingView all trials with filters →
Phase 313 trials
Study of IV Human Plasma-derived C1 Esterase Inhibitor Concentrate in Patients With Congenital C1-INH Deficiency for Treatment and Pre-procedure Preventing of Acute Hereditary Angioedema Attacks
Phase 3
Actively Recruiting
· Sites: Centennial, Colorado; Farmington Hills, Michigan +20 more · Age: 299 yrs
A Study to Assess the Long-Term Safety and Efficacy of Donidalorsen in the Prophylactic Treatment of Hereditary Angioedema (HAE)
Phase 3
Active
· Sites: Paradise Valley, Arizona; La Jolla, California +48 more · Age: 1299 yrs
An Open-label Extension Trial to Evaluate the Long-term Safety of KVD900 (Sebetralstat) for On-Demand Treatment of Angioedema Attacks in Adolescent and Adult Patients With Hereditary Angioedema (HAE)
Phase 3
Active
PI: Study Director (KalVista Pharmaceuticals, Ltd.) · Sites: Scottsdale, Arizona; Little Rock, Arkansas +18 more · Age: 1299 yrs
Study of Oral Deucrictibant Extended-Release Tablet for Prophylaxis Against Angioedema Attacks in Adolescents and Adults With HAE
Phase 3
Active
PI: Study Director, Pharvaris (Pharvaris Netherlands B.V.) · Sites: Little Rock, Arkansas; San Diego, California +54 more · Age: 1299 yrs
PK Subtrial in Adolescent Patients With HAE Type I or II Participating in the KVD900-302 Trial
Phase 3
Active
PI: Study Director (KalVista Pharmaceuticals, Ltd.) · Sites: Scottsdale, Arizona; Little Rock, Arkansas +18 more · Age: 1217 yrs
A Study of Navenibart in Participants With Hereditary Angioedema
Phase 3
Actively Recruiting
· Sites: Birmingham, Alabama; Scottsdale, Arizona +77 more · Age: 1299 yrs
Donidalorsen Treatment in Children With Hereditary Angioedema
Phase 3
Actively Recruiting
· Sites: Santa Monica, California; St Louis, Missouri +1 more · Age: 211 yrs
Berotralstat Treatment in Children With Hereditary Angioedema
Phase 3
Active
PI: Jolanta Bernatoniene, MD (Bristol Royal Hospital for Children) · Sites: Vienna, Ontario; Ottawa, Ontario +13 more · Age: 211 yrs
A Long-Term Study of Navenibart in Participants With Hereditary Angioedema
Phase 3
Enrolling by Invitation
· Sites: Scottsdale, Arizona · Age: 1299 yrs
STOP-HAE: A Phase 3 Study of ADX-324 in HAE
Phase 3
Actively Recruiting Prior treatment eligible
PI: Lauge Farnaes, MD (ADARx Pharmaceuticals, Inc.) · Sites: Little Rock, Arkansas; Walnut Creek, California +12 more · Age: 1899 yrs
HAELO: A Phase 3 Study to Evaluate NTLA-2002 in Participants With Hereditary Angioedema (HAE)
Phase 3
Active
· Sites: Scottsdale, Arizona; San Diego, California +27 more · Age: 1699 yrs
Long-Term, Open-label Study of Oral Deucrictibant Extended-Release Tablet for Prophylaxis Against Angioedema Attacks in Adolescents and Adults With HAE
Phase 3
Actively Recruiting
PI: Study Director, Pharvaris (Pharvaris Netherlands B.V.) · Sites: Santa Monica, California; Walnut Creek, California +22 more · Age: 1299 yrs
Open-label Berotralstat Access to HAE Patients Previously Enrolled in Berotralstat Studies
Phase 3
Enrolling by Invitation
PI: Vesna Grivcheva-Panoska, MD, PhD (PHI University Clinic of Dermatology) · Sites: Ottawa; Brno +14 more · Age: 299 yrs
Phase 41 trial
Safety Study in Subjects ≥ 12 Years of Age With Hereditary Angioedema Switching to Garadacimab
Phase 4
Actively Recruiting
PI: Study Director (CSL Behring) · Sites: Litchfield Park, Arizona; Bentonville, Arkansas +8 more · Age: 1299 yrs
Phase 22 trials
A Phase 2 in Adult Subjects With Hereditary Angioedema
Phase 2
Active Prior treatment eligible
PI: Markus Magerl, Doctor (Charite-Universitaetsmedizin Berlin - Klinik fuer ) · Sites: Silver Spring, Maryland; St Louis, Missouri +16 more · Age: 1870 yrs
A Long-term Study of STAR-0215 in Participants With Hereditary Angioedema
Phase 2
Active
· Sites: Birmingham, Alabama; Scottsdale, Arizona +20 more · Age: 1899 yrs
Phase 11 trial
Oral Deucrictibant for Prophylactic and Acute Treatment in Hereditary Angioedema Patients
Phase 1
Actively Recruiting
PI: Henry Li, MD · Sites: Wheaton, Maryland · Age: 1875 yrs
Other1 trial
Long-Term Follow-Up (LTFU) of Subjects Treated With NTLA 2002
Enrolling by Invitation
· Sites: Campbelltown, New South Wales; Grenoble +5 more

Specialists

Showing 25 of 44View all specialists →
HM
Henry Li, MD
Wheaton, Maryland
Specialist

Rare Disease Specialist

JM
Jolanta Bernatoniene, MD
Vienna, Ontario
Specialist

Rare Disease Specialist

MD
Markus Magerl, Doctor
Silver Spring, Maryland
Specialist

Rare Disease Specialist

LP
Laurence Bouillet, Professor
Grenoble
Specialist

Rare Disease Specialist

PI on 3 active trials
GD
Global Clinical Program Director
Specialist
PI on 5 active trials
LM
Lauge Farnaes, MD
Little Rock, Arkansas
Specialist

Rare Disease Specialist

PI on 3 active trials
MM
Michael Osthoff, PD Dr. med.
Specialist
PI on 5 active trials
PM
Peter Bauer, MD
Specialist
PI on 5 active trials
AM
Anurag Relan, MD
SANTA MONICA, CA
Specialist
PI on 4 active trials
MP
Marcelo Serra, PhD
Buenos Aires, Buenos Aires
Specialist

Rare Disease Specialist

PI on 1 active trial
GD
Global Program Director
Phoenix, Arizona
Specialist

Rare Disease Specialist

PI on 2 active trials
JC
Joanne Collier
BERNALILLO, NM
Specialist
PI on 3 active trials
FA
Frédéric ADNET
Specialist
PI on 1 active trial
BG
Bruno Giannetti
Specialist
PI on 1 active trial
ML
Michael Lunn
LONE TREE, CO
Specialist
PI on 1 active trial
DC
Danny M Cohn
Specialist
7 Hereditary angioedema publications
JB
Jonathan A Bernstein
Specialist
6 Hereditary angioedema publications
AR
Avner Reshef
Specialist
5 Hereditary angioedema publications
AZ
Andrea Zanichelli
Specialist
5 Hereditary angioedema publications
IB
Isabelle Boccon-Gibod
Specialist
4 Hereditary angioedema publications
KB
Konrad Bork
Specialist
4 Hereditary angioedema publications
MC
Mauro Cancian
Specialist
4 Hereditary angioedema publications
SB
Stephen Betschel
Specialist
3 Hereditary angioedema publications

Treatment Centers

8 centers
⚗️ Trial Site

Washington University School of Medicine

📍 St Louis, Missouri

👤 Meagan A Jacoby, M.D., Ph.D.

👤 Janssen Research & Development, LLC Clinical Trial

⚗️ Trial Site

Washington University

📍 St Louis, Missouri

👤 Sawa M Ito, MD, PhD

👤 Anthony A. Amato, MD

⚗️ Trial Site

West China Hospital, Sichuan University

📍 Chengdu, Sichuan

⚗️ Trial Site

Hospital Italiano de Buenos Aires

📍 Buenos Aires, Buenos Aires

⚗️ Trial Site

Clinical Trial Site

📍 Phoenix, Arizona

⚗️ Trial Site

Charité - Universitätsmedizin Berlin

📍 Berlin

⚗️ Trial Site

Peking Union Medical College Hospital

📍 Beijing, Beijing Municipality

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

Financial Resources

9 resources
Kalbitor(ECALLANTIDE)Takeda Pharmaceuticals America, Inc.
TAKHZYRO(LANADELUMAB-FLYO)Takeda Pharmaceuticals America, Inc.
DAWNZERA(DONIDALORSEN)Ionis Pharmaceuticals Inc.

Good Days — Hereditary angioedema

Good Days

Hereditary angioedema

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

HealthWell Foundation — Hereditary angioedema

HealthWell Foundation

Hereditary angioedema

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

NORD Patient Assistance — Hereditary angioedema

NORD Patient Assistance

Hereditary angioedema

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

Patient Services Inc — Hereditary angioedema

Patient Services Inc

Hereditary angioedema

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

The Assistance Fund — Hereditary angioedema

The Assistance Fund

Hereditary angioedema

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

PAN Foundation — Hereditary angioedema

PAN Foundation

Hereditary angioedema

Verified 3d ago
Foundation Grant
foundation grant
Currently closed
Apply Get notified when open

6 travel grants are also available for Hereditary angioedema patients — see Travel Grants below ↓

Travel Grants

6 grants

Accessia Health: Hereditary Angioedema - Public Insurance

Accessia Health

Apply ↗

2026 HAEi Regional Conference Travel Grant

HAE International

Apply ↗

Hereditary Angioedema Financial Assistance Program

The Assistance Fund

Applicants must be U.S. citizens or permanent residents diagnosed with Hereditary Angioedema and prescribed an FDA-approved treatment with existing prescription coverage. Eligibility also requires meeting financial criteria based on household income and size, though specific thresholds are not listed.

Apply ↗

Accessia Health: Hereditary Angioedema - Public Insurance

Accessia Health

Apply ↗

Accessia Health: Hereditary Angioedema - Public Insurance

Accessia Health

Apply ↗

Accessia Health: Hereditary Angioedema - Public Insurance

Accessia Health

Applicants must be residents of the US or Puerto Rico with public insurance (Medicare/Medicaid) and a diagnosis of hereditary angioedema. Eligibility is needs-based and requires submission of income documentation and a medical provider statement.

Apply ↗Up to $7,500

Community

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Latest news about Hereditary angioedema

4 articles
NewsRSSApr 22, 2026
Test Your Knowledge About the Care Team for HAE
This article invites people with HAE (hereditary angioedema) to take a quiz about the different doctors and specialists who help care for HAE patients. You can
AdvocacyRSSApr 22, 2026
Feeling Trapped by HAE? I Have Some Tips for You
This article offers practical advice for people with hereditary angioedema (HAE) who feel limited by their condition. The author encourages patients to focus on
NewsUNITERAREApr 20, 2026
Fund Update: PAN Foundation — Hereditary angioedema Hereditary angioedema fund is currently closed
The PAN Foundation's financial assistance program for hereditary angioedema (HAE) is currently closed and not accepting new applications. Hereditary angioedema
NewsUNITERAREApr 3, 2026
Fund Update: PAN Foundation — Hereditary angioedema Fund Hereditary angioedema fund is currently closed
The PAN Foundation's financial assistance program for hereditary angioedema (HAE) is currently closed and is not accepting new applications. This program previo
See all news about Hereditary angioedema

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Hereditary angioedema

What is Hereditary angioedema?

Hereditary Angioedema is treated with 1 medication in our database, including Takhzyro. 1 of these has manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Takeda. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Hereditary Angioedema treatment below.

How is Hereditary angioedema inherited?

Hereditary angioedema follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Hereditary angioedema typically begin?

Typical onset of Hereditary angioedema is childhood to adulthood. Age of onset can vary across affected individuals.

Are there clinical trials for Hereditary angioedema?

Yes — 20 recruiting clinical trials are currently listed for Hereditary angioedema on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Hereditary angioedema?

25 specialists and care centers treating Hereditary angioedema are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Hereditary angioedema?

1 FDA-approved treatment and 16 patient support programs are currently tracked on UniteRare for Hereditary angioedema. See the treatments and support programs sections for copay assistance, eligibility, and contact details.