Overview
Wolfram-like syndrome is a very rare genetic condition that shares many features with classic Wolfram syndrome but is caused by different genes. Classic Wolfram syndrome is sometimes called DIDMOAD (Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy, and Deafness), and Wolfram-like syndrome can include some or all of these features in varying combinations and severity. The condition primarily affects the body's ability to manage blood sugar (leading to diabetes mellitus), damages the optic nerves (causing progressive vision loss), and may affect hearing. Some patients also develop diabetes insipidus, a condition where the kidneys cannot properly concentrate urine, leading to excessive thirst and urination. Neurological problems such as balance difficulties and bladder dysfunction may also occur. The syndrome results from problems in genes involved in how cells handle stress and maintain proper function of the endoplasmic reticulum, a structure inside cells that helps fold proteins correctly. When these genes do not work properly, certain cells — particularly insulin-producing cells in the pancreas and nerve cells in the eyes and ears — gradually deteriorate. There is currently no cure for Wolfram-like syndrome. Treatment focuses on managing individual symptoms, such as insulin therapy for diabetes, hearing aids for hearing loss, and supportive care for vision problems. Research is ongoing to better understand the condition and develop targeted therapies. Early diagnosis and coordinated care from multiple specialists can help improve quality of life.
Key symptoms:
Diabetes mellitus (high blood sugar requiring insulin)Progressive vision loss due to optic nerve damageHearing loss or deafnessExcessive thirst and frequent urination (diabetes insipidus)Difficulty with balance and coordinationBladder problems or difficulty controlling urinationFatigue and low energyDifficulty seeing colorsMood changes or depressionDifficulty swallowing in advanced casesReduced sense of smell
Clinical phenotype terms (22)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Wolfram-like syndrome.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Wolfram-like syndrome.
Community
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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.What specific gene mutation is causing my (or my child's) condition, and how does it differ from classic Wolfram syndrome?,What symptoms should I watch for as the condition progresses?,How often should we have eye exams, hearing tests, and other monitoring?,Are there any clinical trials or experimental treatments available for Wolfram-like syndrome?,What is the best way to manage diabetes in the context of this syndrome?,Should other family members be tested for this genetic change?,What support services and accommodations are available for school or work?
Common questions about Wolfram-like syndrome
What is Wolfram-like syndrome?
Wolfram-like syndrome is a very rare genetic condition that shares many features with classic Wolfram syndrome but is caused by different genes. Classic Wolfram syndrome is sometimes called DIDMOAD (Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy, and Deafness), and Wolfram-like syndrome can include some or all of these features in varying combinations and severity. The condition primarily affects the body's ability to manage blood sugar (leading to diabetes mellitus), damages the optic nerves (causing progressive vision loss), and may affect hearing. Some patients also develop diabetes i
At what age does Wolfram-like syndrome typically begin?
Typical onset of Wolfram-like syndrome is childhood. Age of onset can vary across affected individuals.
Which specialists treat Wolfram-like syndrome?
16 specialists and care centers treating Wolfram-like syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.