Familial cold urticaria

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ORPHA:47045OMIM:120100L50.2
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Show terms as
2FDA treatments2Active trials7Specialists8Treatment centers

Where are you in your journey?

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

Also known as:

FCASFCUFamilial cold autoinflammatory syndrome

Clinical phenotype terms— hover any for plain English:

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

3 events
Jan 2026A Study to Investigate Efficacy, Safety and Tolerability of Barzolvolimab Versus Placebo in Adults With Cold Induced Urticaria and Symptomatic Dermographism Inadequately Controlled by H1-antihistamines (EMBARQ - ColdU and SD)

Celldex Therapeutics — PHASE3

TrialRECRUITING
Oct 2025A Phase 1 Study of GTX-B001 in Healthy Subjects and Patients With Chronic Inducible Urticaria

Granular Therapeutics Limited — PHASE1

TrialRECRUITING
May 2025Study of BLU-808 in Chronic Inducible Urticaria (CIndU) and Chronic Spontaneous Urticaria (CSU)

Blueprint Medicines Corporation — PHASE2

TrialRECRUITING

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

Treatments

2 available

ILARIS

canakinumab· Novartis Pharmaceuticals Corporation

indicated for the treatment of Familial Cold Autoinflammatory Syndrome (FCAS)

View Details →FDA Label ↗

Arcalyst

rilonacept· Kiniksa Pharmaceuticals, Ltd.

Treatment of Cryopyrin-Associated Periodic Syndromes (CAPS), including Familial Cold Autoinflammatory Syndrome (FCAS), and Muckle-Wells Syndrome (MWS)

View Details →FDA Label ↗

Clinical Trials

2 recruitingView all trials with filters →
Phase 31 trial
A Study to Investigate Efficacy, Safety and Tolerability of Barzolvolimab Versus Placebo in Adults With Cold Induced Urticaria and Symptomatic Dermographism Inadequately Controlled by H1-antihistamines (EMBARQ - ColdU and SD)
Phase 3
Actively Recruiting
· Sites: Birmingham, Alabama; Scottsdale, Arizona +70 more · Age: 18–99 yrs
View on ClinicalTrials.gov ↗I'm interested →
Phase 11 trial
A Phase 1 Study of GTX-B001 in Healthy Subjects and Patients With Chronic Inducible Urticaria
Phase 1
Actively Recruiting
· Sites: Berlin; Berlin · Age: 18–75 yrs
View on ClinicalTrials.gov ↗I'm interested →

Specialists

7 foundView all specialists →
RP
Robert Evans, PharmD.
Specialist
PI on 1 active trial
HM
Hirsh D Komarow, M.D.
BETHESDA, MD
Specialist
PI on 3 active trials
LF
Laura A. Finlayson MD FRCPC
Specialist
PI on 1 active trial
EM
Eric Hachulla, MD,PhD
Specialist
PI on 3 active trials
CJ
Chan Yong Jun
NEW YORK, NY
Specialist
PI on 1 active trial
SP
Simon Haroutounian, PhD
Specialist
PI on 2 active trials
JD
JIN-MOO LEE, Ph. D
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 Familial cold urticaria.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Familial cold urticaria

Disease timeline:

New recruiting trial: Study of BLU-808 in Chronic Inducible Urticaria (CIndU) and Chronic Spontaneous Urticaria (CSU)

A new clinical trial is recruiting patients for Familial cold urticaria

New recruiting trial: A Study to Investigate Efficacy, Safety and Tolerability of Barzolvolimab Versus Placebo in Adults With Cold Induced Urticaria and Symptomatic Dermographism Inadequately Controlled by H1-antihistamines (EMBARQ - ColdU and SD)

A new clinical trial is recruiting patients for Familial cold urticaria

New recruiting trial: A Phase 1 Study of GTX-B001 in Healthy Subjects and Patients With Chronic Inducible Urticaria

A new clinical trial is recruiting patients for Familial cold urticaria

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 Familial cold urticaria

Are there clinical trials for Familial cold urticaria?

Yes — 2 recruiting clinical trials are currently listed for Familial cold urticaria on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Familial cold urticaria?

7 specialists and care centers treating Familial cold urticaria are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.