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kaposiform hemangioendothelioma (KH) - Clinical Profile, Genes & Research | Kisho | Kisho

Rare Disease

kaposiform hemangioendothelioma

MONDO:0016236

Also known as:KHKHEKaposiform hemangio-endothelioma

Find Clinical TrialsTrials

Overview

Kaposiform hemangioendothelioma is a very rare, aggressive, vascular tumor manifesting in the neonatal period or in infancy as cutaneous vascular tumors to large infiltrative lesions.

TreatmentsNo approved treatments · 1 in pipeline

Clinical Trials7 registered · 3 recruiting

Diagnosis

Biomarker and diagnostic research for kaposiform hemangioendothelioma 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.

No approved treatments are currently available for kaposiform hemangioendothelioma. An additional 1 compound holds orphan drug designation.

Orphan Drug Designations

While no drugs are FDA-approved specifically for kaposiform hemangioendothelioma, some of the following designated compounds may be used off-label in clinical practice. Treatment decisions should be made in consultation with a specialist familiar with this condition.

The following drugs have received orphan drug designation from the FDA for kaposiform hemangioendothelioma. Orphan designation reflects regulatory interest and does not indicate approval for treatment.

Brand Name	Generic Name	Sponsor

Prognosis

Estimated prevalence: Unknown (Unknown prevalence).

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.

7 clinical trials registered, 3 recruiting. Interventions under study include other interventions and drug therapy. Pipeline includes 1 PHASE4, 3 PHASE2. Research is primarily sponsored by academic and government institutions.

NCT ID	Title	Phase	Sponsor	Status
[NCT03001180](https://clinicaltrials.gov/study/NCT03001180)

Data assembled from 5 of 12 sources · Last updated Sep 19, 2026, 12:51 AM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Medical References

External Resources

Orphanet

European rare disease database

Orphanet:2122

GARD

Genetic and Rare Diseases Info Center

GARD:3077

Questions for Your Care Team

→Are any of the 7 active clinical trials a good fit for my situation?
→What is the current development status of sirolimus, and when might it become available?
→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

Research Type	Count	% of Total
Patient case studies	33	45%
Research summaries	10	14%
Clinical study results	7	10%
Other research	6	8%
Testing and diagnosis research	6	8%
Laboratory research	6	8%
Disease patterns and progression	4	5%
New treatment approaches	1	1%

Kisho

kaposiform hemangioendothelioma

Overview

Diagnosis

Treatment

Orphan Drug Designations

Prognosis

Research Landscape

Medical References

External Resources

Orphanet

GARD

Questions for Your Care Team

Questions for Your Care Team

Clinical Trials

Recent Publications

Latest News & Developments

High Responsiveness of Head and Neck Kaposiform Hemangioendothelioma Without Kasabach-Merritt Phenomenon to Sirolimus Monotherapy.

Spontaneous Regression of Kaposiform Hemangioendothelioma Without Kasabach-Merritt Phenomenon.

kaposiform hemangioendothelioma

Overview

Diagnosis

Treatment

Orphan Drug Designations

Prognosis

Research Landscape

Medical References

External Resources

Orphanet

GARD

Related Diseases

Questions for Your Care Team

Questions for Your Care Team

Clinical Trials

Recent Publications

Latest News & Developments

High Responsiveness of Head and Neck Kaposiform Hemangioendothelioma Without Kasabach-Merritt Phenomenon to Sirolimus Monotherapy.

Spontaneous Regression of Kaposiform Hemangioendothelioma Without Kasabach-Merritt Phenomenon.