Wilson disease

Last reviewed

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ORPHA:905OMIM:277900E83.0
Who is this for?
Show terms as
2FDA treatments13Active trials18Specialists8Treatment centers7Financial 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

Wilson Disease is treated with 1 medication in our database, including Depen. 1 of these has manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Viatris. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Wilson Disease treatment below.

Also known as:

Clinical phenotype terms— hover any for plain English:

Amplification of sexual behaviorHP:5200321Abnormality of the menstrual cycleHP:0000140
Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Childhood to adulthood

Can begin any time from childhood through adulthood

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

10 events
Jun 2026Endocrine Dysfunction in Pediatric Wilson's Disease

Assiut University

TrialNOT YET RECRUITING
May 2026Trientine Tetrahydrochloride Administered Once a Day for the First Line Treatment of Wilson's Disease Patients.

Orphalan — PHASE3

TrialNOT YET RECRUITING
Feb 2026Description of Renal Involvement in Wilson's Disease

Fondation Ophtalmologique Adolphe de Rothschild

TrialNOT YET RECRUITING
Jan 2026Off Treatment Urinary Copper Excretion in Wilson Disease, Pilot Study

Yale University — NA

TrialRECRUITING
Dec 2025A Clinical Study on the Treatment of Wilson Disease With ATP7B mRNA/LNP (DSL101)

DSciLab Co., Ltd. — EARLY_PHASE1

TrialRECRUITING
Dec 2025Prescreening Study to Identify Potential Wilson Disease Participants for Gene-Editing Clinical Trial

Prime Medicine, Inc.

TrialRECRUITING
Dec 2025Multifaceted Assessment of Patients With Wilson's Disease in a Low-Resource Setting in Upper Egypt: Service Integration, Psychosocial Burden, Dietary Practices, and the Geo-Spatial Disease Map

Assiut University

TrialNOT YET RECRUITING
Nov 2025Wilson's Disease Treated With D-Penicillamine: Characterization of Skin Damage Secondary to Treatment by Measuring Skin Elasticity

Centre Hospitalier Universitaire de Saint Etienne — NA

TrialRECRUITING
Oct 2025Phase I/II Clinical Study to Evaluate the Safety, Tolerability, and Efficacy of GC310 Injection in Patients With Wilson's Disease (WD)

GeneCradle Inc — PHASE1, PHASE2

TrialNOT YET RECRUITING
Jul 2025Gene Therapy for Wilson Disease Evaluated by 64Cu PET/CT

Thomas Damgaard Sandahl

TrialENROLLING BY INVITATION

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

Treatments

2 available

Penicillamine

PENICILLAMINE· Endo USA, Inc.■ Boxed Warning

indicated in the treatment of Wilson's disease

Galzin

Zinc acetate· Eton Pharmaceuticals, IncOrphan Drug

For maintenance treatment of patients with Wilson's disease who have been initially treated with a chelating agent.

Clinical Trials

13 recruitingView all trials with filters →
N/A2 trials
Off Treatment Urinary Copper Excretion in Wilson Disease, Pilot Study
N/A
Actively Recruiting
PI: Michael L Schilsky, MD FAASLD (Yale University) · Sites: New Haven, Connecticut · Age: 1899 yrs
Wilson's Disease Treated With D-Penicillamine: Characterization of Skin Damage Secondary to Treatment by Measuring Skin Elasticity
N/A
Actively Recruiting
PI: JEAN-LUC PERROT, PHD (Service de Dermatologie, Hôpital Nord CHU de Saint) · Sites: Bron; Saint-Etienne · Age: 1299 yrs
Other8 trials
Circadian Variation of Urinary Copper Excretion in Wilson Disease Patients
Actively Recruiting
· Sites: Bron, Rhone · Age: 670 yrs
Spanish Wilson Disease Registry
Actively Recruiting
PI: Zoe Mariño (Asociación Española para el Estudio del Hígado) · Sites: Barcelona · Age: 1899 yrs
French Wilson Disease Registry
Actively Recruiting
· Sites: Paris, Île-de-France Region · Age: 099 yrs
Role for Biochemical Assays and Kayser-Fleischer Rings in Diagnosis of Wilson Disease
Actively Recruiting
PI: Zhi-Ying Wu (Second Affiliated Hospital, Zhejiang University Sc) · Sites: Hangzhou, Zhejiang · Age: 665 yrs
Prescreening Study to Identify Potential Wilson Disease Participants for Gene-Editing Clinical Trial
Actively Recruiting
· Sites: Los Angeles, California; Sacramento, California +5 more · Age: 1899 yrs
Gene Therapy for Wilson Disease Evaluated by 64Cu PET/CT
Enrolling by Invitation
· Sites: Aarhus, Aarhus N · Age: 1899 yrs
Natural History of Wilson Disease
Actively Recruiting
· Sites: New Haven, Connecticut; Orlando, Florida +4 more
Oral Health and Wilson's Disease: SOMAWI
Actively Recruiting
PI: Marjolaine GOSSET (Hopital Charles Foix) · Sites: Ivry-sur-Seine; Ivry-sur-Seine +1 more · Age: 1899 yrs

Specialists

18 foundView all specialists →
AM
Aurélia POUJOIS, MD
Specialist
PI on 2 active trials1 Wilson disease publication
UD
Ultragenyx Medical Director
Little Rock, Arkansas
Specialist

Rare Disease Specialist

PI on 4 active trials
MP
Marcelo Serra, PhD
Buenos Aires, Buenos Aires
Specialist

Rare Disease Specialist

PI on 1 active trial
MF
Michael L Schilsky, MD FAASLD
New Haven, Connecticut
Specialist

Rare Disease Specialist

PI on 1 active trial
LD
Liang Peng, Doctor
HOUSTON, TX
Specialist
PI on 8 active trials
AD
Arndt Rolfs, Prof. Dr.
Specialist
PI on 4 active trials
CP
Chaohui Yu, PhD
Hangzhou, Zhejiang
Specialist

Rare Disease Specialist

EC
Edouardo COUCHONNAL-BEDOYA
Specialist
PI on 1 active trial
ES
Eugene Swenson
NEW HAVEN, CT
Specialist
PI on 1 active trial
MG
Marjolaine GOSSET
Specialist
PI on 1 active trial
ZM
Zoe Mariño
Specialist
PI on 1 active trial
ES
Eugene S. Swenson
NEW HAVEN, CT
Specialist
PI on 4 active trials
GB
George J. Brewer
Specialist
PI on 2 active trials
EP
Elon Pras
Specialist
PI on 1 active trial
MS
Michael Schilsky
NEW HAVEN, CT
Specialist
PI on 1 active trial
JF
Jian-Gao Fan
Specialist
PI on 1 active trial
KW
Karl-Heinz Weiss
Specialist
PI on 1 active trial

Treatment Centers

8 centers
⚗️ Trial Site

Yale School of Medicine

📍 New Haven, Connecticut

👤 Sara Pai

🏥 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

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Financial Resources

5 resources
Penicillamine(PENICILLAMINE)Endo USA, Inc.
Galzin(Zinc acetate)Eton Pharmaceuticals, Inc

PAN Foundation — Wilson disease

PAN Foundation

Wilson disease

Verified 4d ago
Foundation Grant
foundation grant
Accepting applications

NORD Patient Assistance — Wilson disease

NORD Patient Assistance

Wilson disease

Verified 4d ago
Foundation Grant
foundation grant
Accepting applications

The Assistance Fund — Wilson disease

The Assistance Fund

Wilson disease

Verified 4d ago
Foundation Grant
foundation grant
Accepting applications

2 travel grants are also available for Wilson disease patients — see Travel Grants below ↓

Travel Grants

2 grants

RELIVE Organization Medication Assistance

RELIVE Organization

Apply ↗

Wilson Disease Association Patient Assistance Program

Wilson Disease Association

Medically stable patients with rare diseases requiring travel over long distances for specialized care are eligible for free air and ground transportation. Services are provided at no cost to the patient and family for as long and as often as they need to fly.

Apply ↗

Community

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Latest news about Wilson disease

1 articles
ResearchPUBMEDMar 26, 2026
TikTok as a Platform for Patient Education and Health Information in Rare Genetic Diseases: Cross-Sectional Study.
Researchers studied 184 videos on TikTok about five rare genetic diseases to see how well the platform helps patients learn about their conditions and connect w
See all news about Wilson disease

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 Wilson disease

What is Wilson disease?

Wilson Disease is treated with 1 medication in our database, including Depen. 1 of these has manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Viatris. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Wilson Disease treatment below.

How is Wilson disease inherited?

Wilson disease follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Wilson disease typically begin?

Typical onset of Wilson disease is childhood to adulthood. Age of onset can vary across affected individuals.

Are there clinical trials for Wilson disease?

Yes — 13 recruiting clinical trials are currently listed for Wilson disease on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Wilson disease?

18 specialists and care centers treating Wilson disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Wilson disease?

1 FDA-approved treatment and 5 patient support programs are currently tracked on UniteRare for Wilson disease. See the treatments and support programs sections for copay assistance, eligibility, and contact details.