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epidermolysis bullosa - Clinical Profile, Treatments & Trials | Kisho | Kisho

Rare Disease

epidermolysis bullosa

MONDO:0006541

Also known as:acantholysis bullosaEB

Find Clinical TrialsTrials

Overview

Epidermolysis bullosa (EB) is a group of genetic skin diseases that cause the skin to blister very easily. Blisters form in response to minor injuries or friction, such as rubbing or scratching. There are four main types of epidermolysis bullosa: dystrophic epidermolysis bullosa Epidermolysis bullosa simplex Junctional epidermolysis bullosa Kindler Syndrome Identifying the exact type can be hard because there are many subtypes of EB. Within each type or subtype, a person may be mildly or severely affected. The disease can range from being a minor inconvenience to completely disabling, and fatal in some cases. Most types of EB are inherited. The inheritance pattern may be autosomal dominant or autosomal recessive. Management involves protecting the skin, reducing friction against the skin, and keeping the skin cool.

Treatments1 FDA approved

Clinical Trials43 registered · 20 recruiting

Diagnosis

Biomarker and diagnostic research for epidermolysis bullosa has been reported in the published literature.

Treatment

Compiled from FDA-approved drug records, orphan drug designations, and FDA Adverse Event Reporting System (FAERS) safety data. GeneReviews management guidance is included where available.

1 FDA-approved treatment is available for epidermolysis bullosa, including BIRCH TRITERPENES (FILSUVEZ, approved 2023). An additional 16 compounds hold orphan drug designation.

Approved Therapies

Brand Name	Generic Name	Mechanism	Approved	Market Status

Research Landscape

Sourced from ClinicalTrials.gov and PubMed. Publication types are classified using NLM-curated article metadata; research type breakdowns reflect the nature of published work for this disease.

43 clinical trials registered, 20 recruiting. Interventions under study include drug therapy, biologic therapy, other interventions, and medical devices. Pipeline includes 3 PHASE4, 9 PHASE3, 7 PHASE2. Research is sponsored by a mix of industry and academic institutions.

NCT ID	Title	Phase	Sponsor	Status
[NCT07016750](https://clinicaltrials.gov/study/NCT07016750)

Data assembled from 4 of 12 sources · Last updated Sep 18, 2026, 1:35 PM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Medical References

External Resources

GARD

Genetic and Rare Diseases Info Center

GARD:6359

Questions for Your Care Team

→What are the benefits and potential side effects of FILSUVEZ for managing epidermolysis bullosa?
→Are any of the 43 active clinical trials a good fit for my situation?
→Are there specialists or centers of excellence for this condition in my area?
→Is there a patient registry I should consider joining?

← Back to All Diseases

Brand Name	Generic Name	Sponsor	Designated	Exclusivity End	Designation Status
sterile, processed, homogenized amniotic fluid solution	sterile, processed, homogenized amniotic fluid solution	Eliksa Therapeutics, Inc.	2025	—	Designated
aseptic, allogeneic, pooled human umbilical cord derived mesenchymal stromal cells	aseptic, allogeneic, pooled human umbilical cord derived mesenchymal stromal cells	INmune Bio Inc.	2025	—	Designated
25 C-terminal amino acids of human thrombin	25 C-terminal amino acids of human thrombin	Xinnate AB	2024	—	Designated
allantoin (5-ureidohydantoin or glyoxyldiureide)	allantoin (5-ureidohydantoin or glyoxyldiureide)	Paradigm Therapeutics	2024	—	Designated
4-Hydroxy-4'-methyoxytolan	4-Hydroxy-4'-methyoxytolan	BioMendics, LLC	2023	—	Designated
Adenine	Adenine	Energenesis Biomedical Co. Ltd.	2022	—	Designated
epidermal stem cells genetically modified with a gamma-retroviral (rv) vector expressing the full-length LAMB3 cDNA	epidermal stem cells genetically modified with a gamma-retroviral (rv) vector expressing the full-length LAMB3 cDNA	Holostem S.r.l.	2020	—	Designated
cannabidiol	cannabidiol	Tetra Bio-Pharma Inc.	2020	—	Designated
Hypotonic, acid oxidizing solution containing hypochlorous acid (HClO)	Hypotonic, acid oxidizing solution containing hypochlorous acid (HClO)	APR Applied Pharma Research s.a.	2019	—	Designated
allogeneic skin-derived ABCB5-positive mesenchymal stem cells	allogeneic skin-derived ABCB5-positive mesenchymal stem cells	RHEACELL GmbH & Co. KG	2019	—	Designated
Losartan	Losartan	Crowd Pharma Losartan GmbH & Co. KG	2019	—	Designated
Diacerein	Diacerein	WORPHMED Srl	2018	—	Designated
adipose-derived mesenchymal stem cells in a hydrogel sheet	adipose-derived mesenchymal stem cells in a hydrogel sheet	Anterogen Co., Ltd.	2018	—	Designated
ubidecarenone	ubidecarenone	BPGbio, Inc	2018	—	Designated
Dermagraft	Dermagraft	Shire Regenerative Medicine, Inc.	2010	—	Designated
Thymosin beta 4	Thymosin beta 4	HLB Therapeutics Co., Ltd	2004	—	Designated

Research Type	Count	% of Total
Research summaries	47	25%
New treatment approaches	33	17%
Disease patterns and progression	28	15%
Laboratory research	26	14%
Patient case studies	23	12%
Clinical study results	21	11%
Other research	8	4%
Testing and diagnosis research	3	2%

Kisho

epidermolysis bullosa

Overview

Diagnosis

Treatment

Approved Therapies

Research Landscape

Medical References

External Resources

GARD

Questions for Your Care Team

Questions for Your Care Team

Orphan Drug Designations

Clinical Trials

Recent Publications

Latest News & Developments

Correction to: Quality of life in children and adults with epidermolysis bullosa: the QoL-REB explorative study.

An ITGB4 variant modifies the severity of ITGA3-associated interstitial lung disease, nephrotic syndrome, and epidermolysis bullosa (ILNEB).

Health-related quality of life in recessive dystrophic epidermolysis bullosa: findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES).

HR 7877: To require the Secretary of Health and Human Services to establish a demonstration program to test mandatory coverage of treatment for wound care for epidermolysis bullosa under the Medicaid program.

epidermolysis bullosa

Overview

Diagnosis

Treatment

Approved Therapies

Research Landscape

Medical References

External Resources

GARD

Related Diseases

Questions for Your Care Team

Questions for Your Care Team

Orphan Drug Designations

Clinical Trials

Recent Publications

Latest News & Developments

Correction to: Quality of life in children and adults with epidermolysis bullosa: the QoL-REB explorative study.

An ITGB4 variant modifies the severity of ITGA3-associated interstitial lung disease, nephrotic syndrome, and epidermolysis bullosa (ILNEB).

Health-related quality of life in recessive dystrophic epidermolysis bullosa: findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES).

HR 7877: To require the Secretary of Health and Human Services to establish a demonstration program to test mandatory coverage of treatment for wound care for epidermolysis bullosa under the Medicaid program.