Hereditary angioedema with normal C1Inh

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ORPHA:528647T78.3
Who is this for?
Show terms as
2FDA treatments9Specialists8Treatment centers2Financial resources

Where are you in your journey?

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

Also known as:

Clinical phenotype terms— hover any for plain English:

AngioedemaHP:0100665Intestinal edemaHP:0005225Edema of the upper limbsHP:0010742Laryngeal edemaHP:0012027Genital edemaHP:0031188Tongue edemaHP:0040315Decreased circulating complement C4 concentrationHP:0045042
Orphanet ↗NORD ↗

Treatments

2 available

FEIBA

ANTI-INHIBITOR COAGULANT COMPLEX· Takeda Pharmaceuticals America, Inc.■ Boxed Warning

Control and prevention of bleeding episodes

HYMPAVZI

MARSTACIMAB-HNCQ· Pfizer Laboratories Div Pfizer Inc
routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adult and pediatric patients 12 years of age and older with hemophilia B (congenital factor IX deficiency) without factor

routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adult and pediatric patients 12 years of age and older with hemophilia B (congenital factor IX deficiency) without factor IX inhibitors

No actively recruiting trials found for Hereditary angioedema with normal C1Inh at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Hereditary angioedema with normal C1Inh community →

Specialists

9 foundView all specialists →
PD
Program Director
Specialist
PI on 9 active trials
GD
Global Clinical Program Director
Specialist
PI on 5 active trials
JM
Jonathan Bernstein, MD
Specialist
PI on 2 active trials
AM
Anurag Relan, MD
SANTA MONICA, CA
Specialist
PI on 4 active trials
MM
Marcus Maurer, Prof MD
PUEBLO, CO
Specialist
PI on 1 active trial
MM
Marc Riedl, MD
SAN DIEGO, CA
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Financial Resources

2 resources
FEIBA(ANTI-INHIBITOR COAGULANT COMPLEX)Takeda Pharmaceuticals America, Inc.
HYMPAVZI(MARSTACIMAB-HNCQ)Pfizer Laboratories Div Pfizer Inc

Travel Grants

No travel grants are currently matched to Hereditary angioedema with normal C1Inh.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Hereditary angioedema with normal C1Inh

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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 with normal C1Inh

Which specialists treat Hereditary angioedema with normal C1Inh?

9 specialists and care centers treating Hereditary angioedema with normal C1Inh 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 with normal C1Inh?

2 patient support programs are currently tracked on UniteRare for Hereditary angioedema with normal C1Inh. See the treatments and support programs sections for copay assistance, eligibility, and contact details.