Inherited epidermolysis bullosa

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ORPHA:79361
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Show terms as
1FDA treatments4Active trials43Specialists8Treatment centers

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

Also known as:

Epidermolysis bullosa hereditariaHereditary epidermolysis bullosa
Orphanet ↗NORD ↗

FDA & Trial Timeline

6 events
Jul 2026An Open Label Extension Safety Study to Evaluate SD-101 in Epidermolysis Bullosa

Paradigm Therapeutics — PHASE3

TrialNOT YET RECRUITING
May 2026Efficacy and Safety Study to Evaluate SD-101 in Epidermolysis Bullosa

Paradigm Therapeutics — PHASE3

TrialNOT YET RECRUITING
Oct 2023Allogeneic ABCB5-positive Dermal Mesenchymal Stromal Cells for Treatment of Epidermolysis Bullosa (Phase III)

RHEACELL GmbH & Co. KG — PHASE3

TrialACTIVE NOT RECRUITING
Jun 2023Allogeneic ABCB5-positive Dermal Mesenchymal Stromal Cells for Treatment of Epidermolysis Bullosa (Phase III, Cross-over)

RHEACELL GmbH & Co. KG — PHASE3

TrialACTIVE NOT RECRUITING
Jun 2023Impact of Complex Care Training of Hereditary Epidermolysis Bullosa on Caregiver Burden (FIREB)

Assistance Publique - Hôpitaux de Paris — NA

TrialACTIVE NOT RECRUITING
Mar 2018FARD (RaDiCo Cohort) (RaDiCo-FARD)

Institut National de la Santé Et de la Recherche Médicale, France — NA

TrialRECRUITING

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

Treatments

1 available

Aminocaproic Acid

AMINOCAPROIC ACID· American Regent, Inc.

Urinary fibrinolysis may frequently be associated with life-threatening complications following shock

View Details →FDA Label ↗

Clinical Trials

4 recruitingView all trials with filters →
Phase 32 trials
Allogeneic ABCB5-positive Dermal Mesenchymal Stromal Cells for Treatment of Epidermolysis Bullosa (Phase III, Cross-over)
Phase 3
Active
· Sites: Buenos Aires; Salzburg +14 more
View on ClinicalTrials.gov ↗I'm interested →
Allogeneic ABCB5-positive Dermal Mesenchymal Stromal Cells for Treatment of Epidermolysis Bullosa (Phase III)
Phase 3
Active
· Sites: Aurora, Colorado; Minneapolis, Minnesota
View on ClinicalTrials.gov ↗I'm interested →
N/A2 trials
FARD (RaDiCo Cohort) (RaDiCo-FARD)
N/A
Actively Recruiting
PI: Christine BODEMER (INSERM UMR 1163) · Sites: Bobigny; Bordeaux +13 more
View on ClinicalTrials.gov ↗I'm interested →
Impact of Complex Care Training of Hereditary Epidermolysis Bullosa on Caregiver Burden (FIREB)
N/A
Active
PI: Sandrine COMPAIN, RN (Necker Hospital, APHP) · Sites: Paris · Age: 18–99 yrs
View on ClinicalTrials.gov ↗I'm interested →

Specialists

Showing 25 of 43View all specialists →
JM
Jean Tang, MD
SEATTLE, WA
Specialist
PI on 1 active trial
JP
Jean Tang, MD, PhD
SEATTLE, WA
Specialist
PI on 3 active trials
AM
Agnes Schwieger-Briel, MD
Specialist
PI on 1 active trial
AM
Albert S Chiou, MD/MBA
STANFORD, CA
Specialist
PI on 1 active trial
CM
Céline Greco, MD
Specialist
PI on 1 active trial
AM
Alfred Lane, MD
STANFORD, CA
Specialist
PI on 2 active trials1 Inherited epidermolysis bullosa publication
AP
Alain Hovnanian, Prof
Specialist
PI on 1 active trial
EM
Elena Pope, MD
SANTA FE, NM
Specialist
PI on 4 active trials
SP
Su Chan Kim, PhD
Specialist
PI on 1 active trial
DM
David Woodley, MD
BUFFALO, NY
Specialist
PI on 3 active trials
AM
Amy S Paller, MD
CHICAGO, IL
Specialist
PI on 4 active trials
JP
Jakub Tolar, MD, PhD
MINNEAPOLIS, MN
Specialist
PI on 3 active trials
TM
Theresa Podrebarac, MD
CAMBRIDGE, MA
Specialist
PI on 1 active trial
CB
Christine BODEMER
Bobigny
Specialist

Rare Disease Specialist

PI on 2 active trials
SR
Sandrine COMPAIN, RN
Paris
Specialist

Rare Disease Specialist

PI on 1 active trial
JM
Johann W Bauer, Prof., MD
Specialist
PI on 1 active trial
CP
Christine Bodemer, MD, PhD
Specialist
PI on 4 active trials
PP
Patricia Grocott, PhD
Specialist
PI on 1 active trial
JM
J E Mellerio
ALEXANDRIA, VA
Specialist
2 Inherited epidermolysis bullosa publications
CB
C Bodemer
Specialist
2 Inherited epidermolysis bullosa publications
AS
Alina Suru
Specialist
2 Inherited epidermolysis bullosa publications
CS
Carmen Maria Sălăvăstru
Specialist
2 Inherited epidermolysis bullosa publications
NB
Nathalia Bellon
Specialist
2 Inherited epidermolysis bullosa publications
RL
Renata Linertová
Specialist
2 Inherited epidermolysis bullosa publications
AD
Andrea Diociaiuti
Specialist
2 Inherited epidermolysis bullosa publications

Treatment Centers

8 centers
⚗️ Trial Site

Hôpital Necker-Enfants Malades

📍 Paris

👤 Julien Rossignol, Dr

⚗️ Trial Site

Hôpital Saint-Louis

📍 La Defense, Paris

👤 Study Physician +46 08-697-20 00, medical.info@sobi.com

⚗️ Trial Site

Hôpital de la Timone

📍 Marseille

🏥 NORD

Stanford Medicine Rare Disease Center ↗

Stanford Medicine

📍 Stanford, 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

🔬 UDN

UCLA UDN Clinical Site ↗

UCLA Health

📍 Los Angeles, CA

🏥 NORD

Mayo Clinic Center for Individualized Medicine ↗

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

Travel Grants

No travel grants are currently matched to Inherited epidermolysis bullosa.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Inherited epidermolysis bullosa

Disease timeline:

New recruiting trial: Gentamicin for Junctional Epidermolysis Bullosa

A new clinical trial is recruiting patients for Inherited epidermolysis bullosa

New trial: FARD (RaDiCo Cohort) (RaDiCo-FARD)

Phase NA trial recruiting.

New trial: Impact of Complex Care Training of Hereditary Epidermolysis Bullosa on Caregiver Burden (FIREB)

Phase NA trial recruiting. Complex Care Training of Hereditary Epidermolysis Bullosa

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 Inherited epidermolysis bullosa

Are there clinical trials for Inherited epidermolysis bullosa?

Yes — 4 recruiting clinical trials are currently listed for Inherited epidermolysis bullosa on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Inherited epidermolysis bullosa?

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