Living with Acro-renal-mandibular syndrome
A rare condition present at birth with differences in the hands, feet, kidneys, and lower jaw.
Understanding Acro-renal-mandibular syndrome
It includes split hand and split foot, missing or small kidneys or polycystic kidneys, uterine differences, and a very small lower jaw. Other features can include poorly developed lungs, low amniotic fluid, and hip dislocation. GARD lists onset as during pregnancy and as a newborn.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Split hand and split foot
- Missing or small kidney
- Small lower jaw (micrognathia)
- Heart-shaped uterus
- Poorly developed lungs
- Hip dislocation
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes (also called variants) cause this condition. An autosomal recessive pattern has been suggested, so a child would inherit a changed copy of the gene from each parent.
Also known as: acro-renal-uterine-mandibular syndrome; acrorenal mandibular syndrome; split hand and split foot with mandibular hypoplasia; split hand and split foot with mandibular hypoplasia syndrome; split hand/split foot-mandibular hypoplasia syndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Acro-renal-mandibular syndrome.
Explore research for Acro-renal-mandibular syndrome
Explore actively recruiting Acro-renal-mandibular syndrome studies with HealthSpark.
Find actively recruiting studies for Acro-renal-mandibular syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Acro-renal-mandibular syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Acro-renal-mandibular syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Acro-renal-mandibular syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.