What is Rare non-malformative uterine adnexal disease?
Rare non-malformative uterine adnexal disease is a broad category that refers to uncommon conditions affecting the uterine adnexa — the structures near the uterus, including the ovaries, fallopian tubes, and surrounding tissues — that are not caused by birth defects (malformations) and are not cancerous. These conditions can include rare benign (non-cancerous) tumors, cysts, inflammatory conditions, or other unusual growths or changes in the ovaries, fallopian tubes, or nearby ligaments and tissues. Symptoms can vary widely depending on the specific condition but may include pelvic pain, abnormal menstrual bleeding, bloating, difficulty getting pregnant, or sometimes no symptoms at all. Some conditions may be discovered incidentally during imaging for other reasons. Because these diseases are rare, they can be challenging to diagnose and may require specialized evaluation by gynecologists experienced in rare conditions. Treatment depends on the specific type of adnexal disease and may range from watchful waiting and monitoring to surgical removal of the affected tissue. Hormonal therapies or other medications may be used in some cases. Because this is a grouping of many different rare conditions rather than a single disease, the treatment approach is highly individualized. Early and accurate diagnosis is important to guide appropriate management and preserve fertility when possible.
Key symptoms:
Pelvic pain or discomfortAbnormal menstrual bleedingHeavy or irregular periodsBloating or feeling of fullness in the lower bellyPain during sexual intercourseDifficulty getting pregnant or infertilityA mass or lump felt in the pelvic areaLower back painFrequent urination or pressure on the bladderNo symptoms at all (found by accident on imaging)
- Age of Onset
- Adult
- Begins in adulthood (age 18 or older)
Treatments
Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly
No FDA-approved treatments are currently listed for Rare non-malformative uterine adnexal disease.
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 Rare non-malformative uterine adnexal disease 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 Rare non-malformative uterine adnexal disease.
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 Rare non-malformative uterine adnexal disease.
Community
No community posts yet. Be the first to share your experience with Rare non-malformative uterine adnexal disease.
Start the conversation →Latest news about Rare non-malformative uterine adnexal disease
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 Rare non-malformative uterine adnexal disease.
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.What specific type of adnexal condition do I have, and how was it diagnosed?,Is this condition likely to affect my ability to have children?,What are my treatment options, and which do you recommend for my situation?,Will I need surgery, and if so, can it be done in a minimally invasive way?,How often will I need follow-up imaging or check-ups?,Are there any signs or symptoms I should watch for that would require emergency care?,Should I seek a second opinion from a specialist in rare gynecologic conditions?
Common questions about Rare non-malformative uterine adnexal disease
What is Rare non-malformative uterine adnexal disease?
Rare non-malformative uterine adnexal disease is a broad category that refers to uncommon conditions affecting the uterine adnexa — the structures near the uterus, including the ovaries, fallopian tubes, and surrounding tissues — that are not caused by birth defects (malformations) and are not cancerous. These conditions can include rare benign (non-cancerous) tumors, cysts, inflammatory conditions, or other unusual growths or changes in the ovaries, fallopian tubes, or nearby ligaments and tissues. Symptoms can vary widely depending on the specific condition but may include pelvic pain, abno
At what age does Rare non-malformative uterine adnexal disease typically begin?
Typical onset of Rare non-malformative uterine adnexal disease is adult. Age of onset can vary across affected individuals.
Frequently asked questions about Rare non-malformative uterine adnexal disease
Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.
What is Rare non-malformative uterine adnexal disease?
Rare non-malformative uterine adnexal disease is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:180303). Inheritance pattern depends on the specific subtype. Age of onset is generally adult. For verified primary sources, see the UniteRare Rare non-malformative uterine adnexal disease page.
Are there FDA-approved treatments for Rare non-malformative uterine adnexal disease?
Approved treatments for Rare non-malformative uterine adnexal disease 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 Rare non-malformative uterine adnexal disease?
Active clinical trials for Rare non-malformative uterine adnexal disease 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 Rare non-malformative uterine adnexal disease?
Verified Rare non-malformative uterine adnexal disease 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 Rare non-malformative uterine adnexal disease page for complete clinical details, sources, and verified-specialist listings.
Cite this page
Select a citation format above to view and copy.