Disease Directory Hermansky-Pudlak Syndrome
Respiratory

Hermansky-Pudlak Syndrome

Also known as: HPS, oculocutaneous albinism with pulmonary fibrosis and platelet dysfunction

Prevalence

Approximately 1 in 500,000–1,000,000; higher in Puerto Rico (1 in 1,800)

Onset

Childhood (pulmonary fibrosis typically adult onset)

Type

Rare autosomal recessive lysosomal storage disorder

Gene

HPS1, HPS3, HPS4 (multiple)

About Hermansky-Pudlak Syndrome

Hermansky-Pudlak syndrome is a multisystem disorder characterised by oculocutaneous albinism, a platelet storage pool defect, and the accumulation of ceroid lipofuscin in tissues. Pulmonary fibrosis, the leading cause of death, develops in adulthood and is most severe in individuals with HPS-1 and HPS-4 subtypes. The interstitial lung disease in HPS closely resembles idiopathic pulmonary fibrosis histologically, making subtype classification critical for both prognosis and trial eligibility.

Common Clinical Features

Oculocutaneous albinism (reduced skin and hair pigmentation) Visual impairment and nystagmus Platelet dysfunction causing easy bruising and prolonged bleeding Progressive interstitial pulmonary fibrosis Granulomatous colitis Recurrent respiratory infections Fatigue and declining exercise capacity

Clinical Trial Eligibility Tips

What to know before applying to Hermansky-Pudlak Syndrome trials.

Identify your HPS subtype (HPS-1 through HPS-10) before applying, as trials targeting pulmonary fibrosis often restrict enrolment to fibrosis-prone subtypes (HPS-1, HPS-4).

Bleeding risk from platelet dysfunction may disqualify patients from trials requiring invasive procedures such as bronchoscopy or biopsy; disclose platelet function test results upfront.

HRCT evidence of pulmonary fibrosis and recent PFTs are standard screening requirements; ensure imaging is within the trial's specified time window.

Patient Resources

Patient Organization

Hermansky-Pudlak Syndrome Network

Visit website ↗

Natural History Registry

HPS Network Patient Registry

Join registry ↗

Orphanet

European reference resource for rare diseases (ORPHA:79430)

View on Orphanet ↗

NORD

National Organization for Rare Disorders

Search NORD ↗

Find recruiting Hermansky-Pudlak Syndrome trials

Search 500,000+ studies from ClinicalTrials.gov, filtered for Hermansky-Pudlak Syndrome. Updated daily.

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