What is Sirenomelia?
Sirenomelia does not yet have FDA-approved treatments tracked on UniteRare.
Clinical phenotype terms— hover any for plain English:
- Absence of the sacrumHP:0010305
- SirenomeliaHP:0010497
- Inheritance
- Sporadic
- Usually appears on its own, not inherited from a parent
- Age of Onset
- Neonatal
- Begins at or shortly after birth (first 4 weeks)
Treatments
Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly
No FDA-approved treatments are currently listed for Sirenomelia.
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 Sirenomelia 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 Sirenomelia.
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 Sirenomelia.
Community
No community posts yet. Be the first to share your experience with Sirenomelia.
Start the conversation →Latest news about Sirenomelia
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 Sirenomelia.
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.
Common questions about Sirenomelia
What is Sirenomelia?
Sirenomelia, also known as 'mermaid syndrome,' is an extremely rare and usually fatal congenital malformation characterized by the fusion of the lower limbs, giving the appearance of a mermaid's tail. This condition arises during early embryonic development and results in a spectrum of severity ranging from fusion of soft tissues only to the presence of a single fused lower limb with a single femur and fused or absent tibia and fibula. Sirenomelia is almost always accompanied by severe abnormalities of the urogenital and gastrointestinal systems, including renal agenesis (absence of both kidne
How is Sirenomelia inherited?
Sirenomelia follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Sirenomelia typically begin?
Typical onset of Sirenomelia is neonatal. Age of onset can vary across affected individuals.
Frequently asked questions about Sirenomelia
Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.
What is Sirenomelia?
Sirenomelia is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:3169, OMIM 600145). It is typically inherited as sporadic. Age of onset is generally neonatal. For verified primary sources, see the UniteRare Sirenomelia page.
How is Sirenomelia inherited?
Sirenomelia 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.
Are there FDA-approved treatments for Sirenomelia?
Approved treatments for Sirenomelia 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 Sirenomelia?
Active clinical trials for Sirenomelia 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 Sirenomelia?
Verified Sirenomelia 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 Sirenomelia page for complete clinical details, sources, and verified-specialist listings.
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