Epidermolysis bullosa simplex with extracutaneous involvement

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ORPHA:595351
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1Specialists8Treatment 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:

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
May 2025National Epidemiology of Cutaneous Lymphomas

IRCCS Azienda Ospedaliero-Universitaria di Bologna — NA

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Epidermolysis bullosa simplex with extracutaneous involvement.

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No actively recruiting trials found for Epidermolysis bullosa simplex with extracutaneous involvement at this time.

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

Search ClinicalTrials.gov ↗Join the Epidermolysis bullosa simplex with extracutaneous involvement community →

Specialists

1 foundView all specialists →
AM
Alessandro Pileri, MD
Bologna, Bologna
Specialist

Rare Disease Specialist

1 Epidermolysis bullosa simplex with extracutaneous involvement publication

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 Epidermolysis bullosa simplex with extracutaneous involvement.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Epidermolysis bullosa simplex with extracutaneous involvement

Disease timeline:

New trial: National Epidemiology of Cutaneous Lymphomas

Phase NA trial recruiting.

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 Epidermolysis bullosa simplex with extracutaneous involvement

Which specialists treat Epidermolysis bullosa simplex with extracutaneous involvement?

1 specialists and care centers treating Epidermolysis bullosa simplex with extracutaneous involvement are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.