What is NON RARE IN EUROPE: Familial Dupuytren contracture?
Familial Dupuytren contracture, also known as Dupuytren's disease or Dupuytren's contracture, is a condition that affects the connective tissue just beneath the skin of the palm of the hand. Over time, this tissue thickens and tightens, forming rope-like cords that can pull one or more fingers into a bent position. The ring finger and little finger are most commonly affected, but any finger can be involved. The condition usually develops slowly over many years and is not painful for most people, though it can cause significant loss of hand function. The 'familial' form means the condition runs in families and has a strong genetic component. People with a family history of Dupuytren contracture are much more likely to develop it themselves. Both hands can be affected, and some people also develop similar tissue changes in the soles of their feet (Ledderhose disease) or in the tissue of the penis (Peyronie's disease). Treatment options range from non-surgical approaches like needle fasciotomy and collagenase injections (such as Xiaflex, which is FDA-approved) to surgical removal of the affected tissue. While these treatments can improve finger movement, the condition can come back after treatment. There is currently no cure that permanently stops the disease from progressing.
Key symptoms:
Thickened, puckered, or pitted skin on the palm of the handFirm lumps or nodules under the skin of the palmTough, rope-like cords running from the palm toward the fingersOne or more fingers gradually bending toward the palm and unable to straighten fullyDifficulty opening the hand flatTrouble gripping large objectsDifficulty putting on gloves or shaking handsBoth hands affected in some peopleSimilar lumps or cords on the soles of the feet (Ledderhose disease)Similar tissue changes in the penis (Peyronie's disease) in some men
- Inheritance
- Autosomal dominant
- Passed on from just one parent; each child has about a 50% chance of inheriting it
- Age of Onset
- Adult
- Begins in adulthood (age 18 or older)
FDA & Trial Timeline
4 eventsRamsay Générale de Santé — NA
Universitaire Ziekenhuizen KU Leuven — NA
Universitaire Ziekenhuizen KU Leuven — NA
Elsan — NA
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 NON RARE IN EUROPE: Familial Dupuytren contracture.
3 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest
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: Familial Dupuytren contracture.
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
Financial Resources
1 resourcesSource: manufacturer patient-assistance programs (PAP) + copay-card programs · NORD Patient Assistance · HealthWell Foundation + disease-specific foundation grants · links verified by automated cron
XIAFLEX
Endo
Dupuytren's contracture
Travel Grants
No travel grants are currently matched to NON RARE IN EUROPE: Familial Dupuytren contracture.
Community
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Start the conversation →Latest news about NON RARE IN EUROPE: Familial Dupuytren contracture
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: Familial Dupuytren contracture.
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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 severe is my contracture, and does it need treatment now or can we monitor it?,What are the pros and cons of needle fasciotomy, collagenase injection, and surgery for my specific situation?,How likely is the condition to come back after treatment, and what are my options if it does?,Should my children or siblings be checked for this condition?,Is there anything I can do to slow the progression of the disease?,Would occupational therapy or hand exercises help me at this stage?,Are there any clinical trials or new treatments I should know about?
Common questions about NON RARE IN EUROPE: Familial Dupuytren contracture
What is NON RARE IN EUROPE: Familial Dupuytren contracture?
Familial Dupuytren contracture, also known as Dupuytren's disease or Dupuytren's contracture, is a condition that affects the connective tissue just beneath the skin of the palm of the hand. Over time, this tissue thickens and tightens, forming rope-like cords that can pull one or more fingers into a bent position. The ring finger and little finger are most commonly affected, but any finger can be involved. The condition usually develops slowly over many years and is not painful for most people, though it can cause significant loss of hand function. The 'familial' form means the condition run
How is NON RARE IN EUROPE: Familial Dupuytren contracture inherited?
NON RARE IN EUROPE: Familial Dupuytren contracture follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does NON RARE IN EUROPE: Familial Dupuytren contracture typically begin?
Typical onset of NON RARE IN EUROPE: Familial Dupuytren contracture is adult. Age of onset can vary across affected individuals.
Are there clinical trials for NON RARE IN EUROPE: Familial Dupuytren contracture?
Yes — 3 recruiting clinical trials are currently listed for NON RARE IN EUROPE: Familial Dupuytren contracture on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
What treatment and support options exist for NON RARE IN EUROPE: Familial Dupuytren contracture?
1 patient support program are currently tracked on UniteRare for NON RARE IN EUROPE: Familial Dupuytren contracture. See the treatments and support programs sections for copay assistance, eligibility, and contact details.
Frequently asked questions about NON RARE IN EUROPE: Familial Dupuytren contracture
Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.
What is NON RARE IN EUROPE: Familial Dupuytren contracture?
NON RARE IN EUROPE: Familial Dupuytren contracture is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:79142). It is typically inherited as autosomal dominant. Age of onset is generally adult. For verified primary sources, see the UniteRare NON RARE IN EUROPE: Familial Dupuytren contracture page.
How is NON RARE IN EUROPE: Familial Dupuytren contracture inherited?
NON RARE IN EUROPE: Familial Dupuytren contracture follows autosomal dominant 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: Familial Dupuytren contracture?
Approved treatments for NON RARE IN EUROPE: Familial Dupuytren contracture 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 recruiting for NON RARE IN EUROPE: Familial Dupuytren contracture?
UniteRare currently lists 3 clinical trials relevant to NON RARE IN EUROPE: Familial Dupuytren contracture sourced from ClinicalTrials.gov. Each trial entry includes recruitment status, eligibility criteria summary, principal-investigator information, and study locations. Patients should discuss eligibility with their healthcare provider before enrolling.
How do I find a specialist for NON RARE IN EUROPE: Familial Dupuytren contracture?
Verified NON RARE IN EUROPE: Familial Dupuytren contracture 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: Familial Dupuytren contracture page for complete clinical details, sources, and verified-specialist listings.
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