Hereditary angioedema with C1Inh deficiency

Last reviewed

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ORPHA:528623OMIM:619360D84.1
Who is this for?
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9Specialists8Treatment centers

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:

Pharyngeal edemaHP:0011855Laryngeal edemaHP:0012027Serpiginous cutaneous lesionHP:0025527Genital edemaHP:0031188Decreased circulating C1-esterase inhibitor concentrationHP:0034204Decreased circulating complement C4 concentrationHP:0045042AngioedemaHP:0100665Muscular edemaHP:0100748Non-pitting edemaHP:6000507Erythema marginatumHP:6001012
Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Hereditary angioedema with C1Inh deficiency.

View clinical trials →

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

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

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

Specialists

9 foundView all specialists →
MR
Mikhail Rojavin
Specialist
PI on 1 active trial
PD
Program Director
Specialist
PI on 9 active trials
AM
Anurag Relan, MD
SANTA MONICA, CA
Specialist
PI on 4 active trials
JM
Jonathan Bernstein, MD
Specialist
PI on 2 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

Travel Grants

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

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Hereditary angioedema with C1Inh deficiency

Disease timeline:

New trial: Real-life Ecological Momentary Assessment of Lived Burden in Hereditary AngioEdema

Phase NA trial recruiting. ecological momentary assessment

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 C1Inh deficiency

Which specialists treat Hereditary angioedema with C1Inh deficiency?

9 specialists and care centers treating Hereditary angioedema with C1Inh deficiency are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.