Living with Chromosome 15q26-qter deletion syndrome
A rare chromosome condition with slow growth, developmental delay, hand and foot differences, and sometimes heart or other birth differences.
Understanding Chromosome 15q26-qter deletion syndrome
It includes slow growth before and after birth, developmental delay, intellectual disability of varying degree, and hand and foot differences such as clubfoot. Mild facial differences are common. Newborn swelling from lymph fluid, heart differences, and autism have also been reported. GARD lists onset during pregnancy and at birth.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slow growth and poor weight gain
- Delayed speech and language
- Small head size (microcephaly)
- Cleft palate
- Clubfoot
- Heart or aortic differences
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 Chromosome Disorder Outreach
- 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 it is caused by a missing piece at the end of chromosome 15's long arm (15q26-qter).
Also known as: 15q26 deletion syndrome; chromosome 15q26-qter deletion syndrome, isolated cases; distal 15q deletion syndrome; distal monosomy 15q; distal monosomy type 15q; drayer syndrome
Patient organizations
- Chromosome Disorder OutreachChromosome disorders · United States
Broader rare-disease groups
- 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 Chromosome 15q26-qter deletion syndrome.
Explore research for Chromosome 15q26-qter deletion syndrome
Explore actively recruiting Chromosome 15q26-qter deletion syndrome studies with HealthSpark.
Find actively recruiting studies for Chromosome 15q26-qter deletion 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 Chromosome 15q26-qter deletion 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 Chromosome 15q26-qter deletion 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 Chromosome 15q26-qter deletion 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.