What is NON RARE IN EUROPE: Lichen sclerosus?
Lichen sclerosus (also called lichen sclerosus et atrophicus, or LS) is a long-term skin condition that causes patches of thin, white, and sometimes shiny skin. It most often affects the genital and anal areas, but can occasionally appear on other parts of the body like the upper arms, chest, or neck. The skin in affected areas can become fragile, itchy, and uncomfortable. Over time, scarring can change the shape of the skin in the genital area, which may cause pain during sex or difficulty urinating. Lichen sclerosus is not contagious and cannot be passed from person to person. It affects people of all ages, but is most common in women after menopause and in young girls before puberty. Men and boys can also develop it, usually on the foreskin of the penis. The exact cause is not fully understood, but it is thought to involve the immune system attacking the skin, possibly triggered by hormonal changes or genetic factors. While there is no cure, lichen sclerosus can be managed effectively with treatment. The main treatment is a strong steroid cream or ointment applied to the affected skin. With proper care, most people can control their symptoms and reduce the risk of complications. Regular follow-up with a doctor is important because, in rare cases, long-standing lichen sclerosus in the genital area can increase the risk of a type of skin cancer called squamous cell carcinoma.
Also known as:
Key symptoms:
Intense itching in the genital or anal areaWhite, shiny, or pale patches of skinSkin that looks thin, wrinkled, or fragileSoreness or burning sensationPain during sexBleeding or tearing of the skin with minor frictionDifficulty urinating or a weak urine stream (in men and boys)Narrowing of the vaginal opening over timeTightening of the foreskin in males (phimosis)Blistering or sores in severe casesSkin changes on the upper body, arms, or neck (less common)
- Inheritance
- Multifactorial
- Caused by a mix of several genes and environmental factors
- Age of Onset
- Variable
- Can begin at different ages, from infancy through adulthood
Treatments
Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly
No FDA-approved treatments are currently listed for NON RARE IN EUROPE: Lichen sclerosus.
View clinical trials →Clinical Trials
View all trials with filters →Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest
No actively recruiting trials found for NON RARE IN EUROPE: Lichen sclerosus at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →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 NON RARE IN EUROPE: Lichen sclerosus.
Treatment Centers
8 centersSource: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months
Children's Hospital Colorado Rare Disease Program ↗
Children's Hospital Colorado
📍 Aurora, CO
👤 Boston Children's Hospital Rare Disease Program
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDBoston Children's Hospital Rare Disease Program ↗
Boston Children's Hospital
📍 Boston, MA
👤 Boston Children's Hospital Rare Disease Program
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
🏨 Children'sAnn & Robert H. Lurie Children's Hospital Genetics ↗
Lurie Children's Hospital
📍 Chicago, IL
👤 Boston Children's Hospital Rare Disease Program
🏥 NORDCincinnati Children's Hospital Medical Center ↗
Cincinnati Children's
📍 Cincinnati, OH
👤 Boston Children's Hospital Rare Disease Program
🏨 Children'sNationwide Children's Hospital Rare Disease Center ↗
Nationwide Children's Hospital
📍 Columbus, OH
👤 Boston Children's Hospital Rare Disease Program
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
Travel Grants
No travel grants are currently matched to NON RARE IN EUROPE: Lichen sclerosus.
Community
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Start the conversation →Latest news about NON RARE IN EUROPE: Lichen sclerosus
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 NON RARE IN EUROPE: Lichen sclerosus.
Follow this condition to be notified when news becomes available.
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.
Questions for your doctor
Bring these to your next appointment
- Q1.How do I use the steroid cream correctly, and how long will I need to use it?,How will I know if my treatment is working, and what should I do if my symptoms get worse?,How often do I need to come back for check-ups, and what are you looking for at each visit?,What is my risk of developing skin cancer, and what warning signs should I watch for?,Are there any triggers I should avoid that might cause a flare-up?,Is there any support available for the emotional or sexual health impact of this condition?,Are there any new treatments or clinical trials I should know about?
Common questions about NON RARE IN EUROPE: Lichen sclerosus
What is NON RARE IN EUROPE: Lichen sclerosus?
Lichen sclerosus (also called lichen sclerosus et atrophicus, or LS) is a long-term skin condition that causes patches of thin, white, and sometimes shiny skin. It most often affects the genital and anal areas, but can occasionally appear on other parts of the body like the upper arms, chest, or neck. The skin in affected areas can become fragile, itchy, and uncomfortable. Over time, scarring can change the shape of the skin in the genital area, which may cause pain during sex or difficulty urinating. Lichen sclerosus is not contagious and cannot be passed from person to person. It affects pe
How is NON RARE IN EUROPE: Lichen sclerosus inherited?
NON RARE IN EUROPE: Lichen sclerosus follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Frequently asked questions about NON RARE IN EUROPE: Lichen sclerosus
Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.
What is NON RARE IN EUROPE: Lichen sclerosus?
NON RARE IN EUROPE: Lichen sclerosus is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:33409). It is typically inherited as multifactorial. Age of onset is generally variable. For verified primary sources, see the UniteRare NON RARE IN EUROPE: Lichen sclerosus page.
How is NON RARE IN EUROPE: Lichen sclerosus inherited?
NON RARE IN EUROPE: Lichen sclerosus follows multifactorial 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.
Are there FDA-approved treatments for NON RARE IN EUROPE: Lichen sclerosus?
Approved treatments for NON RARE IN EUROPE: Lichen sclerosus 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.
Are there clinical trials for NON RARE IN EUROPE: Lichen sclerosus?
Active clinical trials for NON RARE IN EUROPE: Lichen sclerosus 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.
How do I find a specialist for NON RARE IN EUROPE: Lichen sclerosus?
Verified NON RARE IN EUROPE: Lichen sclerosus 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 NON RARE IN EUROPE: Lichen sclerosus page for complete clinical details, sources, and verified-specialist listings.
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