Zinc-responsive necrolytic acral erythema

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ORPHA:439196L53.8
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8Treatment centers

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What is Zinc-responsive necrolytic acral erythema?

Zinc-responsive necrolytic acral erythema does not yet have FDA-approved treatments tracked on UniteRare.

Also known as:

Key symptoms:

Dark, well-defined scaly patches on the feet and anklesThickened, hardened skin on affected areasItching of the skin lesionsPain or burning sensation in affected skinCracking or fissuring of the skinBlistering of the skinSkin erosions or raw areasDarkening (hyperpigmentation) of the skinSkin lesions on the tops of the feetSkin lesions on the legs below the kneesSkin lesions on the hands or elbowsSwelling around affected areasFatigue related to underlying liver disease

Inheritance
Sporadic
Usually appears on its own, not inherited from a parent
Age of Onset
Adult
Begins in adulthood (age 18 or older)
Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Aug 2023Reducing Suicide Ideation Among Young People

University of Pittsburgh — NA

TrialACTIVE NOT RECRUITING

Data is compiled from FDA regulatory filings and ClinicalTrials.gov, then processed through automated extraction; event classifications and dates may occasionally be misclassified. Verify against the linked FDA filing or trial record before clinical decisions. Updated periodically.

Treatments

Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly

No FDA-approved treatments are currently listed for Zinc-responsive necrolytic acral erythema.

View clinical trials →

Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest

No actively recruiting trials found for Zinc-responsive necrolytic acral erythema at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Zinc-responsive necrolytic acral erythema community →

Source: NPI Registry + PubMed · trial PI roles cross-referenced with ClinicalTrials.gov · ranked by match score (publications + PI activity + community signal)

No specialists are currently listed for Zinc-responsive necrolytic acral erythema.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers

Source: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months

🏨 Children's

Children's Hospital Colorado Rare Disease Program

Children's Hospital Colorado

📍 Aurora, CO

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Boston Children's Hospital Rare Disease Program

Boston Children's Hospital

📍 Boston, MA

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

🏨 Children's

Ann & Robert H. Lurie Children's Hospital Genetics

Lurie Children's Hospital

📍 Chicago, IL

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

Cincinnati Children's Hospital Medical Center

Cincinnati Children's

📍 Cincinnati, OH

👤 Boston Children's Hospital Rare Disease Program

🏨 Children's

Nationwide Children's Hospital Rare Disease Center

Nationwide Children's Hospital

📍 Columbus, OH

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

Travel Grants

No travel grants are currently matched to Zinc-responsive necrolytic acral erythema.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Zinc-responsive necrolytic acral erythemaForum →

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Latest news about Zinc-responsive necrolytic acral erythema

Source: PubMed + NIH RePORTER + openFDA + clinical-journal RSS · last 30 days · disease-tagged at ingest by AI extraction with human QC

No recent news articles for Zinc-responsive necrolytic acral erythema.

Follow this condition to be notified when news becomes available.

Caregiver Resources

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Questions for your doctor

Bring these to your next appointment

  • Q1.What is my current zinc level, and what dose of zinc supplement should I take?,Do I need to be tested or treated for hepatitis C?,How long will it take for my skin to improve with zinc treatment?,Will I need to take zinc supplements for the rest of my life?,Are there any side effects of long-term zinc supplementation I should watch for?,How often should I come back for blood tests and follow-up visits?,Could my skin condition be something other than necrolytic acral erythema, and should I have a skin biopsy?

Common questions about Zinc-responsive necrolytic acral erythema

What is Zinc-responsive necrolytic acral erythema?

Zinc-responsive necrolytic acral erythema (NAE) is a rare skin condition that primarily affects the hands, feet, and sometimes the legs. It is strongly associated with hepatitis C virus (HCV) infection and low zinc levels in the blood. The disease causes well-defined, dark, scaly, and sometimes painful or itchy patches of skin, most commonly on the tops of the feet, around the ankles, and on the legs. These patches can crack, blister, and become thickened over time. The skin lesions look similar to other conditions like necrolytic migratory erythema (seen in glucagonoma), psoriasis, or acroder

How is Zinc-responsive necrolytic acral erythema inherited?

Zinc-responsive necrolytic acral erythema follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Zinc-responsive necrolytic acral erythema typically begin?

Typical onset of Zinc-responsive necrolytic acral erythema is adult. Age of onset can vary across affected individuals.

Frequently asked questions about Zinc-responsive necrolytic acral erythema

Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.

  1. What is Zinc-responsive necrolytic acral erythema?

    Zinc-responsive necrolytic acral erythema is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:439196). It is typically inherited as sporadic. Age of onset is generally adult. For verified primary sources, see the UniteRare Zinc-responsive necrolytic acral erythema page.

  2. How is Zinc-responsive necrolytic acral erythema inherited?

    Zinc-responsive necrolytic acral erythema follows sporadic inheritance. Genetic counseling is recommended for affected families to understand recurrence risk in offspring and the likelihood of unaffected siblings being carriers. Variants in the underlying gene(s) may be identified via clinical genetic testing.

  3. Are there FDA-approved treatments for Zinc-responsive necrolytic acral erythema?

    Approved treatments for Zinc-responsive necrolytic acral erythema are tracked from openFDA and DailyMed primary sources. Many rare diseases have no specific FDA-approved therapy; for those, supportive care and management of complications form the basis of clinical care. Orphan-drug-designation status is noted where applicable.

  4. Are there clinical trials for Zinc-responsive necrolytic acral erythema?

    Active clinical trials for Zinc-responsive necrolytic acral erythema are tracked daily from ClinicalTrials.gov. Trial availability changes frequently; check the UniteRare trial listings for the current count and recruitment status. Sponsors of rare-disease research often welcome inquiries even when a trial is not actively recruiting at a given moment.

  5. How do I find a specialist for Zinc-responsive necrolytic acral erythema?

    Verified Zinc-responsive necrolytic acral erythema specialists are identified through ClinicalTrials.gov principal-investigator records, peer-reviewed publication authorship (via PubMed), and the NPPES NPI registry. NORD-designated Centers of Excellence and NIH-affiliated rare-disease clinics are also tracked. UniteRare's specialist directory is updated continuously as new evidence becomes available.

See full Zinc-responsive necrolytic acral erythema page for complete clinical details, sources, and verified-specialist listings.

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