Dystrophic epidermolysis bullosa

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ORPHA:303Q81.2
Who is this for?
Show terms as
3FDA treatments20Active trials53Specialists8Treatment centers5Financial 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

Dystrophic Epidermolysis Bullosa is treated with 2 medications in our database, including VYJUVEK, ZEVASKYN. 1 of these has manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Krystal Biotech. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Dystrophic Epidermolysis Bullosa treatment below.

Also known as:

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Jan 2026A Phase 2 Study of TCP-25 Gel in Patients With Epidermolysis Bullosa, STEP-study

Xinnate AB — PHASE2

TrialRECRUITING
Jan 2026GMEB-SASS: A Gene-Modified Skin Substitute for RDEB Treatment

CHU de Quebec-Universite Laval — PHASE1, PHASE2

TrialRECRUITING
Aug 2025Targeting Collagen VII Antibodies With IV IgG in Dystrophic Epidermolysis Bullosa

M. Peter Marinkovich — PHASE1, PHASE2

TrialRECRUITING
Aug 2025DEB-BACE for Primary Lung Cancer: A Retrospective, Single-Arm, Multicenter Study on Efficacy and Safety

Gang Wu, MD

TrialNOT YET RECRUITING
Jul 2025Targeting Collagen VII Antibodies in Bullous Diseases Using Efgartigimod IV (VYVGART)

M. Peter Marinkovich — PHASE1, PHASE2

TrialNOT YET RECRUITING
Jul 2025Efficacy and Safety of DEB-TACE Combined With HAIC Versus HAIC Alone in Patients With Unresectable CRLM

Peking University Cancer Hospital & Institute

TrialNOT YET RECRUITING
Jun 2025A Study Comparing KB803 and Matched Placebo in Patients With Dystrophic Epidermolysis Bullosa

Krystal Biotech, Inc. — PHASE3

TrialRECRUITING
Apr 2025

Zevaskyn: FDA approved

treatment of wounds in adult and pediatric patients with recessive dystrophic epidermolysis bullosa (RDEB)

FDAcompleted
Apr 2025A Study to Learn About the Safety and Efficacy of the Drug Oleogel-S10 in Japanese Patients With Epidermolysis Bullosa

Chiesi Farmaceutici S.p.A. — PHASE3

TrialRECRUITING
Mar 2025Impact of COL7A1 Gene Therapy on SCC Recurrence in RDEB Skin

Stanford University — PHASE2

TrialRECRUITING

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

Treatments

3 available

Filsuvez

BIRCH TRITERPENES· Chiesi USA, Inc.

indicated for the treatment of wounds associated with dystrophic and junctional epidermolysis bullosa (EB) in adult and pediatric patients 6 months of age and older

Vyjuvek

VYJUVEK· Krystal Biotech, Inc.Orphan Drug

treatment of wounds in adult and pediatric patients with dystrophic epidermolysis bullosa (DEB) with mutation(s) in the collagen type VII alpha 1 chain (COL7A1) gene

Zevaskyn

PRADEMAGENE ZAMIKERACEL· Abeona Therapeutics Inc.Orphan Drug

treatment of wounds in adult and pediatric patients with recessive dystrophic epidermolysis bullosa (RDEB)

Clinical Trials

20 recruitingView all trials with filters →
Phase 35 trials
A Study Comparing KB803 and Matched Placebo in Patients With Dystrophic Epidermolysis Bullosa
Phase 3
Actively Recruiting
· Sites: Rancho Santa Margarita, California; Coral Gables, Florida +3 more
A Study to Learn About the Safety and Efficacy of the Drug Oleogel-S10 in Japanese Patients With Epidermolysis Bullosa
Phase 3
Actively Recruiting
· Sites: Fukuoka; Fukuoka +4 more
Evaluation of D-Fi for the Treatment of Wounds Due to DEB
Phase 3
Active
· Sites: Redwood City, California; Santa Margarita, California +2 more · Age: 299 yrs
A Study of FCX-007 for Recessive Dystrophic Epidermolysis Bullosa
Phase 3
Active
· Sites: Stanford, California; Aurora, Colorado +3 more · Age: 299 yrs
A Phase 3b Study for the Treatment of Dystrophic Epidermolysis Bullosa (DEB) in New and Previously EB-101 Treated Patients
Phase 3
Active
PI: Angela Iheanacho, MS (Abeona Therapeutics, Inc) · Sites: Redwood City, California; Worcester, Massachusetts
Phase 22 trials
Study to Evaluate Safety and Efficacy of ALLO-ASC-SHEET in Subjects With Dystrophic Epidermolysis Bullosa
Phase 2
Actively Recruiting
· Sites: Miami, Florida · Age: 460 yrs
A Phase 2 Study of TCP-25 Gel in Patients With Epidermolysis Bullosa, STEP-study
Phase 2
Actively Recruiting
· Sites: Paris; Athens +4 more · Age: 499 yrs
Phase 11 trial
Pilot Study of ELK-003 Eye Drops for Treating Ocular Manifestations of Epidermolysis Bullosa
Phase 1
Active
· Sites: Santiago, Huechuraba · Age: 299 yrs
Other6 trials
A Study to Assess the Incidence of Skin Cancers in Patients With Epidermolysis Bullosa Receiving Filsuvez
Actively Recruiting
· Sites: Toulouse; Thessaloniki +3 more
Artificial Intelligence Patient App for RDEB SCCs
Active
· Sites: Chicago, Illinois · Age: 1299 yrs
Characteristics of Patients With Recessive Dystrophic Epidermolysis Bullosa
Actively Recruiting
PI: Jean Tang, MD, PhD (Stanford University) · Sites: Stanford, California
Study of the Blood and Skin Immunological Profile of Patients With Recessive Dystrophic Epidermolysis Bullosa: in Vivo Analysis and the Impact of Placental Stem Cells in Vitro
Actively Recruiting
PI: Reem Al-Daccak, Dr (Institut National de la Santé Et de la Recherche M) · Sites: Paris; Paris · Age: 1880 yrs
Long-Term Follow-up Protocol
Actively Recruiting
· Sites: Rancho Santa Margarita, California; Redwood City, California +1 more
A Natural History Study of Corneal Abrasions in Patients With Dystrophic Epidermolysis Bullosa (DEB)
Actively Recruiting
· Sites: Pittsburgh, Pennsylvania

Specialists

Showing 25 of 53View all specialists →
CP
Christine Chiaverini, PhD
Specialist
PI on 1 active trial
JP
Jean Tang, MD, PhD
SEATTLE, WA
Specialist
PI on 3 active trials
JM
Jean Tang, MD
SEATTLE, WA
Specialist
PI on 1 active trial
LP
Lucie Germain, PhD
Specialist
PI on 1 active trial
AM
Alfred Lane, MD
STANFORD, CA
Specialist
PI on 2 active trials1 Dystrophic epidermolysis bullosa publication
MP
Masoud Soleimani, Prof
Specialist
PI on 1 active trial
EF
Elena Pope, MD, FRCPC
SANTA FE, NM
Specialist
PI on 1 active trial
MM
Matt P Marinkovich, MD
STANFORD, CA
Specialist
PI on 2 active trials
AP
Alain Hovnanian, Prof
Specialist
PI on 1 active trial
SP
Su Chan Kim, PhD
Specialist
PI on 1 active trial
DM
David Woodley, MD
BUFFALO, NY
Specialist
PI on 3 active trials
JP
Jakub Tolar, MD, PhD
MINNEAPOLIS, MN
Specialist
PI on 3 active trials
AM
Alexandra DJ Mancini, MSc
GREENACRES, FL
Specialist
PI on 1 active trial
JM
Johann W Bauer, Prof., MD
Specialist
PI on 1 active trial
TM
Theresa Podrebarac, MD
CAMBRIDGE, MA
Specialist
PI on 1 active trial
PP
Patricia Grocott, PhD
Specialist
PI on 1 active trial
CP
Christine Bodemer, MD, PhD
Specialist
PI on 4 active trials
PM
Peter Marinkovich, MD
Specialist
PI on 1 active trial
MP
Marc SAPOVAL, MD, PhD
Specialist
PI on 2 active trials
JF
John McGrath, FRCP/FSci/MD
Specialist
PI on 1 active trial
JF
Jo-David Fine
NASHVILLE, TN
Specialist
PI on 1 active trial
HF
Haydar Frangoul
NASHVILLE, TN
Specialist
PI on 1 active trial
SK
Suma M Krishnan
PA
Specialist
2 Dystrophic epidermolysis bullosa publications
VY
Vamsi K Yenamandra
CA
Specialist
2 Dystrophic epidermolysis bullosa publications

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
Filsuvez(BIRCH TRITERPENES)Chiesi USA, Inc.
Vyjuvek(VYJUVEK)Krystal Biotech, Inc.

3 travel grants are also available for Dystrophic epidermolysis bullosa patients — see Travel Grants below ↓

Travel Grants

3 grants

The Assistance Fund: Epidermolysis Bullosa Financial Assistance Program

Applicants must be U.S. citizens or permanent residents diagnosed with Epidermolysis Bullosa and prescribed an FDA-approved treatment with existing coverage. Eligibility also requires meeting financial criteria based on household income and size.

Apply ↗

Chiesi Total Care FILSUVEZ Copay Program

Apply ↗

The Assistance Fund: Epidermolysis Bullosa

The Assistance Fund

Apply ↗

Community

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Latest news about Dystrophic epidermolysis bullosa

Disease timeline:

New recruiting trial: Sirolimus DEB in Coronary Bifurcation Lesions

A new clinical trial is recruiting patients for Dystrophic epidermolysis bullosa

New recruiting trial: Drug-Eluting Bead-Based Transarterial Chemoembolization (DEB-TACE) as a Local Salvage Therapy for Large Lesions in Relapsed and Refractory Diffuse Large B-Cell Lymphoma

A new clinical trial is recruiting patients for Dystrophic epidermolysis bullosa

New recruiting trial: The Efficacy and Safety of Drug Loaded Microsphere Bronchial Artery Chemoembolization (DEB-BACE) Combined With Anlotinib and Adebelimumab in the Third Line Treatment of Advanced NSCLC: a Prospective, Single Arm, Single Center, Exploratory Clinical Study

A new clinical trial is recruiting patients for Dystrophic epidermolysis bullosa

New recruiting trial: DEB-TACE Combined With Apatinib and PD-1 for the Treatment of Intrahepatic Cholangiocarcinoma

A new clinical trial is recruiting patients for Dystrophic epidermolysis bullosa

New recruiting trial: DEB-TACE+RALOX-HAIC vs DEB-TACE for Large HCC

A new clinical trial is recruiting patients for Dystrophic epidermolysis bullosa

New recruiting trial: DEB-TACE With Visualable Microspheres Versus PVA Microspheres for HCC

A new clinical trial is recruiting patients for Dystrophic epidermolysis bullosa

New recruiting trial: DEB-TACE vs cTACE in HCC After TIPS

A new clinical trial is recruiting patients for Dystrophic epidermolysis bullosa

New recruiting trial: Lenvatinib Plus DEB-TACE and HAIC vs. Lenvatinib Plus DEB-TACE for Large HCC With PVTT

A new clinical trial is recruiting patients for Dystrophic epidermolysis bullosa

New recruiting trial: DEB-TACE Versus DEB-TACE Sequential HAIC for Unresectable BCLC Stage C HCC; A Randomized Controlled Trial

A new clinical trial is recruiting patients for Dystrophic epidermolysis bullosa

New recruiting trial: Comparison of PROVISIONal 1-stent Strategy with DEB Versus Planned 2-stent Strategy in Coronary Bifurcation Lesions.

A new clinical trial is recruiting patients for Dystrophic 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 Dystrophic epidermolysis bullosa

What is Dystrophic epidermolysis bullosa?

Dystrophic Epidermolysis Bullosa is treated with 2 medications in our database, including VYJUVEK, ZEVASKYN. 1 of these has manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Krystal Biotech. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Dystrophic Epidermolysis Bullosa treatment below.

Are there clinical trials for Dystrophic epidermolysis bullosa?

Yes — 20 recruiting clinical trials are currently listed for Dystrophic 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 Dystrophic epidermolysis bullosa?

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

What treatment and support options exist for Dystrophic epidermolysis bullosa?

2 FDA-approved treatments and 3 patient support programs are currently tracked on UniteRare for Dystrophic epidermolysis bullosa. See the treatments and support programs sections for copay assistance, eligibility, and contact details.